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Statins and ALS-Like Syndrome

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We can think of few diseases that are more dreadful than ALS (Lou Gehrig's disease). Losing muscle control to the point of total paralysis takes an incredible toll on the patient and the family. We speak from personal experience. A beloved member of our family died from ALS many years ago, so this is not an academic exercise for us.

Several years ago we started hearing rumors about an association between cholesterol-lowering drugs called statins and ALS. At first we rejected this as gossip, rumor and innuendo. We talked with Duane Graveline, MD, about cases he was collecting (see below) and we talked with Beatrice Golomb, MD, about her own research in this matter. We also interviewed Ralph Edwards, MD, Director of the World Health Organization's drug-monitoring center in Uppsala, Sweden about a link between statins and ALS-like syndrome. Extended interview with Dr. Edwards (August, 2007): http://www.peoplespharmacy.com/2007/08/02/extended-interv-3/

Many cardiologists and other physicians could not swallow this idea. Nevertheless, many patients have reported a connection between taking a statin-type medicine and the development of ALS-like symptoms (see comments below). And now there is a new publication from Beatrice Golomb, MD, and her colleagues (Amyotrophic Lateral Sclerosis-Like Conditions in Possible Association with Cholesterol-Lowering Drugs: An Analysis of Patient Reports to the University of California, San Diego (UCSD) Statin Effects Study, Drug Safety, Aug. 8, 2009) http://adisonline.com/drugsafety/pages/currenttoc.aspx

We suspect that there may be individuals who are highly susceptible to muscle pain and weakness brought on by statins. This could be as many as 10 percent of those who take such drugs. There may be a much smaller group that is susceptible to a far worse reaction called ALS-like syndrome.

The FDA has dismissed our concerns and concluded that there is no connection. We certainly hope the FDA is right. If the agency is wrong, however, a terrible tragedy could be unfolding because people in authority have ignored the early warning signals of danger.

 +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Prior Posting July 30, 2007

Duane Graveline MD has reported many cases of ALS (Lou Gehrig's Disease) associated with statin-type cholesterol-lowering drugs. Dr. Graveline has had personal experience with Lipitor and TGA (transient global amnesia) and has written about it in his books, "Statin Drugs Side Effects" and "Lipitor, Thief of Memory." The information is at www.spacedoc.com. Within a year of his TGA attacks he noted the gradual onset of pains and weakness in his back and legs closely subsequently diagnosed as ALS-like. Dr. Graveline now must use a walker full time. To learn more of Dr.Graveline's Lipitor associated ALS-like experience see My Statin Story on his website. Recently Dr. Graveline informed us he has received several hundred statin associated ALS reports.

Although we were aware of muscle problems as well as nerve issues (peripheral neuropathy) associated with statin-type drugs, we had not heard of ALS cases linked to these medications. Then we received an email from a reader of our syndicated newspaper column:

"I read with interest today's letter from a Lipitor taker. I believe Lipitor triggered my ALS, but had a hard time convincing anyone until this World Health Organization report came out:"

"Statins, neuromuscular degenerative disease and an amyotrophic lateral sclerosis-like syndrome: an analysis of individual case safety reports from vigibase."
Edwards IR, Star K, Kiuru A.
Drug Safety 2007;30(6):515-525.

Listen to the lead author, Dr. Ralph Edwards, explain the significance of this research in our extended audio interview.

If you would like to read the abstract, here is the URL for PubMed. You will have to put these terms into the search box: statins neuromuscular amyotrophic

http://www.ncbi.nlm.nih.gov/sites/entrez

The Wall Street Journal has also written about this research. You can find an article by Avery Johnson on the first page of the July 3, 2007 edition:

http://online.wsj.com/article/SB118342971456956235.html

If you have an experience you would like to report about statins in general or an ALS-like syndrome in particular, please write about it here. We will pass on your case report to the FDA.
 

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I read your "Statins--ALS link is controversial." However, I could not find any related information in your website, except the usual memory loss and muscle loss and pain, but no mention of ALS..

I have been taking statins for 15 years. First the muscles in my legs--that let me get up from a sitting position completely deteriorated. Then I suffered from weakness in other muscles, arm and leg plus terrible pain in my leg muscles especially at night. Walking seemed to help control the pain.

I would appreciate some help finding an article to support this connection. My doctors have not admitted that there is any loss of memory or cognitive thinking or leg pain due to the statins because they say there is no sign of it on the blood test they give me once a year.

I have developed a tremor inside--not visible that is getting worse each year.

I read your column in today's newspaper regarding ALS and statins. My mother died a year ago with ALS-type syndrome and she had been taking statins for several years. I hope the FDA researchers will look into this. Thank you.

I was on statins for close to a year when my achilles tendons started aching. I thought it was from not stretching enough before my 2 mile treadmill walk. My doctor sent me for tests-all negative. This myalgia is news to me but I believe it was a reaction to Lipitor.

MY PROBLEM WITH LIPITOR WAS FEELING LIKE I WAS WALKING ON ROCKS MY FEET HURT TO THE POINT OF NOT BEING ABLE TO WALK. WHEN TAKEN OFF THE LIPITOR THE PROBLEMS WENT AWAY IMMEDIATLEY. I TRIED DIFFERENT SHOES, SOCKS, FOOD EVERYTHING, BUT NOTHING HELPED UNTIL THE LIPITOR WAS STOPPED.

I was taking provacol for about 5 yrs.i now have about 40% use of my right hand.i also have lost muscle tone in the hand.i also get spasms in my fingers.i went to 2 neoroligists who found nerve damage, but no cause for the damage. The weakness gets worse when my hand gets cold. Ihave a hard time writing and performing other small tasks. I don,t know what to do next.

I had been taking Lipitor for about 8 years with no problems, then this year I developed a painful muscle soreness in my leg. My orthopedic doctor could only find some arthritis in my hip and I received a CT guided cortisone shot in the hip which didn't help. I then went to physical therapy for several weeks, which also didn't help. Another doctor suggested I stop taking the Lipitor and within two weeks, the pain was gone. I have been taking generic Pravachol for about a week and my doctor and I will monitor if or when my muscle soreness comes back.

I have been taken statins for at least 9 years changing from Lipitor to all others. I have developed muscle weekness in my legs and have lost all the flesh in that area. Now I am on Niacin 500 mg. 3 a day and wondering if this is still causing the problems in my legs? By the end of the day my legs ache terribley. Can I get an answer as to what to do next?

I read your column in today's newspaper regarding studies linking Lipitor to disease. My father suffered a heart attack 12 years ago and was treated with Lipitor after recovery. My father used Lipitor for the past 8 years.

My father had lost muscle tone, strength, pain in his legs, peripheral vision, memory confusion and was just diagnosed with alzheimers. Within those 8 years my father health was slowly declining. Concerns about Lipitor were brought to his physician and he was taken off of it. I believe Lipior had something to do with my fathers health. I hope that the FDA looks in to this matter. Thank you.

Took pravachol @ doctor's suggestion for high cholesterol in 2004. I was 42 years old, the mother of 3 and a person who exercised 4/5 x's per week (running, walking and weights).

After a period of just nine months on this drug my life and health were virtually destroyed. I sincerely & rapidly felt as though I had aged 20 years. I could not stay awake for more than 3 hours at a time and slept the whole time my kids were at school and in the evening before bedtime too. Upon waking in the morning my feet would "buckle" - the oddest sensation, and I would have trouble walking/hobbling on them for at least 15 minutes. Going up my home stairs (or any set of stairs) became a feat as my legs felt too weak to lift...I stopped running & weight-lifting completely - and though I still walked my kids back & forth to school most days ( 2 mile round trip) - after the walk I would collapse on a chair and feel like I had just run a marathon. The exhaustion I felt in my formerly very strong legs was devastating.

In the spring of 2004 I came down with the flu and stopped taking the medication for a week - when I suddenly realized I felt better with the muscle-aches involved in having the flu than I did on an every day basis with Pravachol - I knew something was very wrong. My doctor was not especially interested in my symptoms (initially) and I kept thinking I would adjust. He also told me if I didn't take the medication - with my family history and my cholesterol level I was due for a DEFINITE heart attack - pretty strong persuasion tactics. It should be noted I was taking half the dosage he had prescribed in an effort to alleviate my symptoms - I cannot even imagine what might have happened had I complied with his instructions fully!

In conversations with my children's pediatrician and my husband's chiropractor (who were also taking this medication) I found out they were both experiencing similar muscle reactions/weakness/achiness that was interfereing with their swimming and cycling routines respectively.

At this point I found the idea of my reaction as a "rare" one to be suspect. I saw my doctor & gave him an explicit letter detailing my symptoms, the destruction of my quality of life on this drug, my fatigue and my inability to continue with a long-established exercise routine while taking this medication. I asked him to please report my symptoms. He told me I could never be on any statin drug again and frankly, though still insisting my symptoms were unusual - did not seem the least surprised by them. This past year my 75 year old mom began to experience the same symptoms (after being on Lipitor for 5 years) inclusive of a fever and muscle pain so severe she woke up in the night crying in agony. She is also an avid daily walker of 2-3 miles.

I find your column to be a valuable & balanced forum/source of information. I hate to be cynical - but I feel like we are/were all test subjects in a statin drug experiment and it is failing - though no one wants to accept defeat or admit culpability. I also believe that unless a patient insists - doctors are not reporting reactions as they should be. Thanks for this opportunity to tell my story...Rebecca McCabe

I am a diabetic educator & most of my patients have been on a stinin for high cholesterol - my husband is a pharmacist, also - Any patient on a statin should supplement with CoQ10 10-20 mcg a day and their muscle weakness will improve or dissapate ! It is a known fact that statins deplete the body of this antioxident, and I just don't understand why patients are not being told to take CoQ10 w/ statins, redrice yeast, etc. 9 out of 10 of my patients who reported weakness got relief in a few DAYS!

I was on Simvastatin (20mg) and I had muscle pain and could not walk. The pain was in my legs, arms and all over my body. I had constipation, headache, tingling in my feet and legs and a feeling of just not wanting to do anything. My doctor told me to stop the pill and that I would be better in a week. I am still the same and it has been 2 full weeks. Even the sheets on the bed hurt on my legs. I also experienced leg cramps and a violent shaking after I had the cramp.
Thank you for letting me tell you about this.
Dorene B. Kielich (age 74)

July 31, 2007.
I had been taking Zocor for at least a year and was recently taken off of it. On July 17, I was diagnosed with ALS.

Les Bennett

I have been repeatedly prescribed statins by my Dr. After a significant amount of time on the first one I realized that I had developed increasingly severe pain and weakness in both my leg and arm muscles...there was no sign of a problem in my liver function tests but I was annually diagnosed with blood in my urine without any other symptoms of a kidney infection.

I made a personal decision to stop taking the statin and the weakness, pain and the blood in the urine disappeared. Determined to lower my cholesterol my Dr. has since convinced me to try two additional statins including Zetia and I have had the same results. However, now I know what to look for and I have not endured the side effects for months on end. I am currently looking for natural ways to lower my cholesterol and I do not intend to take statins again.

[Editor's note: Zetia is not a statin]

My initial posting was so overally long I did not go into every detail. However, in response to the posting by the pharmacist's wife. Sherri - I did take CoQ 10 for over two months. It had no affect whatsoever, positve or negative on my symptoms. I was very encouraged by what I had read about CoQ10 and I was truly hoping and expecting it to help -this is not to say it would not work for others and may be worth trying. Rebecca McCabe

I was astonished when I read the article today in the newspaper. It is so unusual to read anything about ALS since it is such a rare disease. My father suffered the effects of it for 14 months before dying at the age of 68. He took Zocor for many years and had trouble with his legs while on it. His doctor refused to believe that the drug could interfere with his walking and cause him pain. He was finally switched to Zetia but never fully recovered from the pain in his knees and legs. He began to have other symptoms and then was diagnosed with ALS. I also have issues with cholestrol and I now know that I will never allow a doctor to give me any statin drugs if there is any chance of this link.

I have been taking Lipitor for about 4 years and have noticed a general weakening of my muscles and tiredness gradually increasing over that time. Recently I moved and was totally exhausted by the move. I have arthritis as well but it did not really interfere with my life but suddenly I could barely get out of bed, getting on and off the toilet was a desperate struggle, and sleeping more than 2 hours until the pain and muscle cramps took over was impossible.

My doctor insisted it was not Lipitor, prescribed prexige which helped the pain the first 2 days but then later only brought the pain level to a 4 and left me chained to the toilet.
The leg cramps during the night were unbelievably painful and the small of my back felt the same as when I was in labour.

I talked to a herbalist who cautioned me about lipitor so I stopped taking it and within 5 days had only 1 episode of leg cramps and none since then. I have used a herbal ointment called Tei-Fu on my leg pain (like shin splints on the front with one especially burning circle on my left lower leg, and a hard ball in my left calf as if I hadn't stretched enough but it usually hurts too much to try and do stretching exercises) with success. I have to use the ointment 5-6 times a day and initially twice during the night but the last 4 nights I have slept about 5 hours straight before the discomfort (not the same level of pain that I had) wakes me up. The pain now is not so much in my knee (which is still stiff) as it is in the shin and the calf. The tiredness remains - it's a constant push to make myself get up and go.

2 years ago I was in a walking club and could easily walk 15-18K every Sunday morning. Now sightseeing in Niagara on the Lake for 10 blocks required 3 sit downs to ease the pain.

History; 67y, American male, Italian ext., tendency to overweight. Diagnosed with 260 chol about 30 years ago. Took various, many statin drugs all caused significant joint and muscle pain which I allowed to go on too long always blaiming cronic back pain, arthritis etc.

Then I noticed I could no longer participate in my much loved sport of bike riding 100 miles /wk. Even though I wanted to and tried to. Then I looked closely at my once big, powerful and beautiful legs and saw they were shrinking. This was ~ 5 years ago and they are still that way. Any physacal activity is very difficult. I stopped the drugs ~2years ago. The pain is gone but so are the muscles.

I am greatful for our medical and pharma. industrees they have done great things for us as a whole, but something is wrong here. I am now depending on my mother to help me. She was diagnosed with high chol. about 20 years ago (260) too late for the statin drug treatments. She is 98 years old, On NO medication. You go girl.

After taking Zocor for 6mos
10yrs ago I developed disabling Rheum. Arthritis, plus many other muscular skeletal disorders.
R patella cyst req. surgery.
Fibromyalgia
Ankylosing Spondylitis
Pes Anserine Bursitis, bilat.
Plantar Fasciitis
Bilat.Torn Rotator Cuffs, req, surgery.
I am now permanently disabled
with Advanced Degenerative Osteoarthritis.

Are you listening FDA? Or is the Drug lobby just too powerful. Feel free to contact me, there is a lot more !!!
Lilian L Finlay RN

THANK YOU so much for bringing this subject to attention! I was on Lipitor (and CoQ10) for more than a year before I started to get muscle weaknesses - arms and legs! I couldn't go up and down stairs, couldn't get up and down from chairs (or the toilet). I told the doctor I was going to stop the Lipitor because I'd be more likely to die from falling and fracturing my hip than from a high LDL cholesterol (and sooner, too).

There's been some other medications I had to stop also - any that even mention a side effect of muscle weakness! Why do doctors ignore our distress? Now, if this is true, about ALS, that's terrible!
Please let the FDA know what's going on because our local physicians apparently are NOT!

I have had problems with Lipitor and vytorin. I had severe muscle and nerve pain. My doctor said he didn't believe it was from vytorin. I stopped medication and slowly got beter; it took 7 weeks.

Started taking Zocar about 6 months ago. Gradually noticed increasing leg muscle hip and back pain. I also noticed increasing fatigue and loss of stamina. My gym workout regimen made me aware of an ever increasing level of physical difficulty in doing the same exercises I had performed for more than a year previously. Going to the supermarket with my wife gradually became more difficult, as an ever increasing discomfort in standing and walking on a concrete floor caused a steady decline in my ability to do so. After discussing these symptoms with my doctor I discontinued taking Zocor. The symptoms that I described began to disipate and have almost completely disapeared. The doctor suggested trying another statin drug, but after this experience I don't think I will.

I too was given Lipitor and started showing high cpk levels. After a few years they stopped the lipitor and gave me zetia with same results. The pain from muscles cramps continued and I developed a foot drop. Now I have been told I have ALS. We need to know if statins are the reason for the increase of people getting this disease.

I started taking Vytorin June 15, 2007 and within a week my hands and feet were so sore I could hardly move them. My doctor took me off Vytorin. He advised going on Lipitor. I waited awhile to see if the symptoms would go away. They did but as soon as I started the Lipitor the symptoms came back. At times my hands are so sore I can't even open a water bottle. I have to move my feet around before I can walk because they are so sore when I step on them. Thenking you for your information and allowing me to inform you about my symptoms. I'm hoping I stopped soon enough so I don't have any problems down the line.

I forgot to mention that when I was having all those muscle pains and weaknesses, I also apparently developed carpal tunnel syndrome. I had surgery for my dominant hand and decided to wait with the other hand. Refusing to continue with the Lipitor and giving my body a chance to heal itself and get rid of the effects of the Lipitor worked and I never had to have surgery on my less dominant hand. Both hands are okay, but - did I relly need to have that surgery? Seems that maybe I did NOT!

I have been taking statins for several years, I took Zocor first and then Lipitor. I am still taking Lipitor. About 2 1/2 years ago I started having tremors in my hands and terrible cramps in my legs. After seeing several doctors, I was diagnosed with ALS in March,2006. Thank you for writing about the possible link bewteen statins and ALS. I would like to have more information about the studies that were done.

My Mother passed away 5 years ago from ALS. She was put on Lipitor and started experiencing muscle weakness, falling, nerve damage, etc.

Initially she contacted her Physician to report the muscle weakness and he told her it could not possibly be from the Lipitor. He was very annoyed at my mother for even questioning him.

My mother was an educated person who had a friend with ALS and she did her research. To this day, we still believe the Lipitor had something to do with the ALS, as she was primarily a healthy person for her age (83y.o.) She diagnosed herself and when the official diagnosis came back, she basically gave up and stopped eating or drinking and lasted only 3 weeks after that.

The Physicians need to listen to their patients!!!!

Thanks for listening and please keep us updated on this development.

I've been taking statins for at least 15 years. I was diagnosed with ALS in November of 2004, but symptoms went back to 2002. Dr Belsh (Robert Wood Johnson Medical Center) says my ALS is slow progressing. If you want more info, email me.

I began taking Lipitor about 5 years ago because of carotid artery plaque build-up. Within about 6 months I began tremendous joint pain. I could not move my arms. Had to have about 5 cortizoid shots to relieve it.

Within another month or two I developed severe plaque psoriasis which I still have to this day. It is so bad that I lose my finger and toe nails, have lesions all over me which bleed regularly. I also developed tremors and leg and foot cramps.

Needless to say, I insisted that I go off statins and nobody will ever convince me that this ALL occurred naturally at the same time without a trigger. I believe that statins damaged my immune system - put it into overdrive.

I still take Zocor 10 mg every third day along with Zetia. My opinion is that statin drugs are POISON but Doctors are so high on them that they consider them a miracle drug and insist on them. I predict that eventually statins will cause more problems than they are worth.

My name is Adeline Nixon and I took Lipitor for a couple of years. I discontinued it upon the development of muscular aches and the inability to lift my feet to walk.
Please keep me informed of any new research studies linking neuromuscular disease to the prior use of Lipitor.

My wife took Lipitor for 10 years and 1-1/2 years ago she developed what doctors thought had been a stroke when she started slurring her speech...however all neurological tests came back negative...she has since developed full ALS and is at terminal stage.

The first indicator of a possible link to Lipitor was when one doctor who practices integrative medicine (he is an MD) took her off the Lipitor and suggested that his readings and research seemed to link Lipitor to the triggering of ALS, however, he said there were not any independent, controlled studies to directly tie Lipitor to ALS. Any studies by the pharmaceutical companies will of course be biased. The increasing number of cases of ALS where Lipitor had been taken for extended time prior to the onset of ALS just seemed to him more than coincidental.

Developed peripheral neuropathy in my feet while taking Lipitor. The progression has been gradual but definite over several years now. My general practitioner and a neurologist cannot find a cause. I cannot prove a link, but stopped taking the statin drugs with the doctor's disapproval.

I have been on Lipitor for at least ten years. I was fine for years then in the last year I started with cramping in my hands and then my toes. I also would be waken at night with awful cramps in my calves. Finally I got back muscle pain. I mentioned it to my sister in law and she said she had a similar problem years ago and when she went off Lipitor all her symtoms went away. Well, I stopped it and within a week most of my cramping was gone. I told my doctor and he told me to stay off Lipitor for awhile and then we will discuss it when I next visit him. It was incredible the difference it made.

I was on Lipitor for 2.5 years. I have a very high pain tolerance. At that time my feet stuck to a hot roof and I had to have 3 people try to remove my feet from the tar. I discussed this loss of strength and have been tested and tested. I am now scheduled for a muscle biopsy. After seeing the article in the Saturday Hearld Tribune, I went to the ALS site. I do not expect a good result from the biopsy.

If I had been told the truth athat this could be thew serious side effect, I would rather take ny chances with cholesterol.

I started taking Vytorin about a 1 1/2 years ago. My age was 67. I started to have cramps all over. The cramps in my toes and fingers were extremely painful. I couldn't get rid of them. In May/07, I would have to pull my self out of my chair; I couldn't walk accross the room without being exhausted. I couldn,t climb stairs...just a few steps.Then in May a Pharmacist told me it was the Vytorin. I stopped taking Vytorin and now I'm about 50% of what I was a 1 1/2 years ago.

Several years ago my doctor insisted I take Lipitor because my chloresterol was 242. I immediately began having muscle pain and in going down steps would feel as I was going to fall on my face and when getting out of a car, my legs would buckle. I stopped Lipitor and the symptoms disappeared. Later the doctor again insisted I take Lipitor. I immediately began having muscle weakness and felt as if I was going to fall and my legs would buckle under me. I stopped Lipitor again and symptoms disappeared. In 2004 I had a problem with my foot and began having muscle and nerve damage in my right leg. This problem has continued for 3 years and the pain from my toes up to my hips and back have sometimes been unbearable. My previously strong legs slimmed down. I wear pain patches and this seems to help, but the muscle/calf weakness has caused me to not be able to walk much or evenly and contributed significantly to my lower quality of life. I can't do what I did previously, going down steps is extremely difficult, and walking in large stores just impossible. I hate to give up and ride a scooter or get a wheelchair, I just want to get my life back. I really believe that taking Lipitor did damage to my muscles and nerves from my toes to my hip.

I sincerely hope this is recognized and something done to inform patients of the danger of taking statins.

I have been taking Zocor for about 2 years. In April, I experienced sharp pains between my shoulder blades. It felt like someone stabed me with a knife. I have had muscle pains ever since. I also have experienced heartburn so bad, I thought I was having a heart attack. Finally, I said enough is enough and quit taking Zocor. The heartburn has disappeared but I still have the muscle pain.

Three years ago my father (now 85 y.o.) was placed on Lipitor as a treatment for elevated cholesterol. After hearing a clinical report of higher doses of Lipitor reversing arterial narrowing, his physician doubled his daily dosage. Within a month of this dosage increase, my father began experiencing progressive weakness in his lower extremities accompanied by disequilibrium. His conditioned worsened over the the next 6 months as his physician discounted his signs and symptoms as the effects of aging.

Prior to taking Lipitor, my father exhibited exceptional strength and stamina for a man of his age. Each day he played 18 holes of golf, insisting that he walk the entire distance a while wheeling his golf clubs behind him. His mind was clear and he had a vibrant sense of humor. At the end of 6 months, my father was diagnosed with Primary Lateral Sclerosis. While my father's physician discontinued his use of Lipitor, she has to date prescribed a series of other statin drugs. He is currently taking Vytorin. His condition has continued to degenerate over the past 2 1/2 years and his signs and symptoms now include: severe loss of muscle mass in his lower extremites, weakness, lack of balance with frequent falls, difficulty swallowing, memory loss, dementia, emotional lability, incontinence, depression and ED.

He has been transformed from a man who embraced life to its fullest to a person who must use a cane to ambulate and who is now filled with despair and hopelessness. I am convinced that my father's abrupt change in health is entirely attributable to his use of statins. He has finally decided to discontinue his statin usage despite his doctor's denial of their possible link to his condition.

I am a Physical Therapist who has come across multiple incidences of muscle pain and weakness with patients taking statin drugs. My mother-in-law has been diagnosed with ALS approximately 2 years ago and had been taking Lipitor for several years. When weakness first appeared I was concerned about her statin drug use. When she was diagnosed with ALS I still had a bad feeling about the drugs, but had never heard of a possible link. She is severely involved at this time and it is very sad to think it could have been caused by a drug intended to be of benefit.

I was on zocor for approxiately 6 years and developed severe leg cramps so they switched me to lipitor and within 8 to 10 months the cramps were returning to my legs. About two years ago, I saw a nuerosurgen for cramping in my hands and was diagnosed with mild carpol tunnel in both hands. I have had instances of slurred speech, as though my tonque was swollen to three times it normal size.

Reading all these comments on statins has made me feel like crying. I have been on every chloresterol drug they make and the result has always been the same, muscle soreness, joint pain, balance problems, etc. I am so glad to hear that others have the same side effects because I felt that I was imagining the side effects and would try another drug until I finally gave up on them all after being on and off over a ten year span. I haven't taken any in the last year and still experience problems with my thighs and some muscle spasams in my legs. Stairs are a nightmare and I have to be careful with my balance. I find that Aleve works pretty well for me and I sometimes take potassium for the cramps.

I would like to know anything forthcoming from the FDA about these drugs.

I also tried red rice yeast to go the NAURAL way and had the same side effects.

In May of 2006 I began to have a slurring of speech problem. Now, a year later it has become worse as well as swallowing, weakness in arms/legs, nerve twitching, uncontrollable crying - all the symptoms of ALS. I began taking Lipitor in February 2006. 10 mg, then 20, then 40 mg. A dear friend sent me the article about statins. I am certainly passing this article on.

I began taking Lipitor 1 1/2 yrs. ago. After several month I started to develop muscle weakness in both legs. I had polio in 1952 at the age of 7 and thought I was experiencing post polio syndrome. Then I developed pain in both knees that was so severe at times I had difficulty walking. Next my balance became affected and I starting falling. Sometimes I fell 2 to 3 times a day. Last December I stopped taking Lipitor and within 2 weeks the pain was gone, my leg strength has return to what it was before Lipitor, and I haven't fallen in the last seven months.

Recently I was on 80 MG of PRAVACHOL. I too, felt tingling sensation in my feet, weakness in my legs, twitching in certain muscles, joints ached. My father passed away (57) from ALS and I started getting concerned. My Doctor, combined these symptoms with my very low vitamin D count to suggest possibility of "Mupliple Sc." Since I have been off the PRAVACHAOL, these symptons have subsided.

I read your article concerning ALS and would like to share this information.

I had heart surgery (Valve repair)in Feb 06, during pre screening tests, it was discovered I had a 33% blockage in one of my main arteries. It was decided to treat the blockage chemically.

When I left the hospital, I was taking a Statin prescription (Zocor). I was not aware of any adverse side effects while takin this medication, however my Dr. changed the prescription to, Crestor in July. Shortly after, I experienced weakness in legs & severe joint pain in hips, knees, lower back, lack of overall strength, & right arm numbness at night. Tests showed that I did not have osteoporosis.

I stopped taking Crestor on Sept 1st & the muscle & joint aches resided. The Dr. insisted I try another Cholestrol medication & I started taking, Vytorin on Oct. 14th. 2006. Every thing seemed fine, but lately have developed lower baack pain & pain across my neck & shoulders. The knees are starting to ache a little.
I am seriously considering to stop taking the Vytorin.

I experienced excruciating and frightening muscle weakness one day at work and had a horrible time driving my gear shift car home (1999). Heard about the statin side effects that night during a tv commercial and stopped the drug immediately. Doctor felt I'd over-reacted and indicated "it will go away within one year." (2007) I can no longer hike, take walks with friends, and all my exercise is either non-weight bearing or water aerobics. All statins were tried because "you'll stroke out/have massive heart attack without the meds." I finally and absolutely refused any statins. A move to a new job resulted in a new doctor who put me on Zetia. At the very bottom of side effects, in very small print, is reference to muscle weakness which was progressing rapidly from current 24/7 discomfort. I now demand prescription niacin, tolerate minor flushing and will never take anything else for high cholesterol. Many of us know our bodies but it's a battle with doctors who dismiss our intelligence about what works for us.

Here's my history with statins:
- I began with Pravachol in 2000 after a heart attack. I was 49 years old at the time. It had no appreciable effect on my chloresteral levels.
- I was switched to Zocor. Within a short time (weeks), I experienced intense pain in my achilles tendons which became so severe that I had difficulty walking.
- I was then switched to Crestor. Within two weeks, I developed severe flu-like symptoms and thought, in fact, that I had the flu. I stopped the Crestor for a couple of weeks and the symptoms went away. Thinking the flu had passed, I started Crestor again. The flu symptoms returned within a week and were more severe.
- I was then switched to Lipitor and have been on it for about 5 years. Over the past several years, I have experienced diminished short term memory and, more recently, the development of peripheral neuropathy in my legs and arms. I also developed arthritis in my knee that resulted in surgery. Until now, it did not occur to me that there might be a connection between statins, arthritis and my knee problem.

My mother took lipitor for 1 year and became distraught from weak muscles, and fatigue. Her c.p.k. count has been as high as 6,487, and she has undergone muliple testing from area doctors, and at Barnes Hospital in St. Louis MO, and was finally diagnosed with a rare illness called "Body Inclusion Myositis".

She's been told she can never take any over the counter medications, or have any kind of anethisia due to her illness. She to has great difficulty getting off the toilet, out of a chair, in and out of her vehicle, etc. Everything that I've researched on her illness states there is no treatment. They have been giving her a large dose of a cancer fighting drug called Methotraxate, but only made her more fatigued.

After reading an article in the newspaper we are finding that some doctors are actually calling the illness A.L.S.. I'm wondering now about the ramifications of a misdiagnosis. Are they just pulling names for the illness out of a hat because they mimic the same symptoms? There is a definite neuromuscular illness caused by the cholesterol drugs, and what is being done to stop it from becoming an epidemic? Can you tell us if there is a direct link to the Lipitor as it seems there is, and how others are being treated for this illness?

My husband, a physically active golfer, sailor, pilot was prescribed Lipitor to control his cholesterol. There was a strong Family history of heart/ cholesterol problems. His parents took Statin drugs with no apparent side effects.

He stareted taking Lipitor around 1990 and was diagnosed with ALS in May of 2003. He did not speak of any problems prior to Jan. 2003 when he developed a problem with his left foot.

He died from the disease in Dec.2004 at age 68.

Because of a slightly elevated cholesterol and family history, I was prescribed a low dose (10mg) of Pravastatin (Prevachol) in Feb.2006.
As time went on, there was a general worsening of my back pain and muscular weakness . In May 2007, I quit taking Pravastatin, and have seen much improvement in my condition. ( Age 69)

I am very interested in pursuing all possible links/causes to ALS.......

I suffer from a disease called Charcott Marie Tooth, which took 10 years to be diagnosed. the original symptons started when I was on Rezulin and worsened on Lipitor. First symptons was severe leg cramps, now have weakness in my legs, wear AFO's and hands also balance problems.

In 2003/2004 I was on Lipitor for the cholesterol problem. My back muscles got to ache so badly that I had to give up golf, bowling and anything else involving moving around.

I got involved with a physical therapist (MD) who treated me with no success. On my own I quit taking Lipitor and shortly thereafter regained "use" of my body. This April (2007) my physician put me on Zocor.

By mid July my back muscle was as painful as when I was taking Lipitor so I quit taking it. My back is fine again but my physician said I still have to take madication for the cholesterol reading so today (August 2, 2007) I took my first Zetia pill, one per day from now on. If the back pain comes back I will let everyone know.

It is amazing what I have read on this web site. Not many people with the slurring of speech problem and swallowing difficulties. I did not mention that I also began to drool. I may have had a stroke (MRI scheduled as well as EMGs). I went to my pharmacist today and showed him the article about Lipitor. He said, "All doctors tell their patients to let them know if they have any problems with muscle weakness in arms/legs." I just looked at him - - my doctors NEVER told me that. I just re-read the med description that comes with your Rx. Hmmm, I guess if we really knew what severe muscle aching was before it happens we might be more alert. No mention of slurring of speech or difficulty swallowing. I would like to hear from more people who have my problem with speech/swallowing. Will post my EMG results at the end of the month - - could not be scheduled any earlier!

I have taking Lipitor for 3 1/2 years. I have been having horrible pain in the extrimeties, swelling, fatigue and pain in the bottom of my feet. No Dr is concerned and I am immobile. I have gone to several drs. MC

My wife was on Zocor for the past four years...In January of this year she was diagnosed with ALS.. same symptoms as Ela Marie posted August 2nd ...

Here is my story:
My name is Christopher Wunsch. A former Critical Care Registered Nurse for 12 years active practice. My cholesterol had been elevated since I was 20 years old, that I know of. While practicing Critical Care Nursing, my father, 58 at the time had undergone multiple bypass heart surgery, after which, I decided I needed to do something about my cholesterol, so my doctor prescribed Lipitor 10 mg every day.

I was fine with that, because there were little side effects listed about lipitor. I had taken it, for approximately 4 years, when I began to have episodes of confusion, extreme fatigue, and vomiting, for which I was seen in the local Emergency Department on 3 different occasions. I had a CT scan done, which was normal, and I asked for an MRI which I was told was not necessary. After I was sent home the 3rd occasion, I called my family doctor at home, and I requested he order an MRI, which he agreed to, which showed "Multiple scattered lesions throughout my brain. And I was told I have MS. Over the next few weeks my condition worsened, and I was seen at the UW Hospital in Madison, at the MS clinic, where I was told I don't think you have MS. I don't know exactly what it is, but I don't think it is MS.

I was sent home with a follow up appointment in a few weeks, over which I was becoming gravely ill, in October 2002 and was hospitalized for 28 days at the University of Wisconsin Hospital in Madison. During this hospitalization, I underwent nearly $300,000 in medical care, which included several MRI scans of my brain, which revealed multiple scattered lesions of the white matter of my brain. I had a Muscle biopsy, which the findings were consistent with a progressive neurological disease known as Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-like Episodes, aka (MELAS). My lactic acid levels done during this hospitalization were elevated, consistent with the Diagnosis of MELAS. I was prescribed a Mitochondrial Cocktail to be taken twice daily.

I also underwent a brain Biopsy which the findings demonstrated "vacuolization of both neurophil and neuronal cytoplasm. The mitochondrial have thickened disarrayed christae and inclusions of lysosomal and autophagic vacuoles." For which the final Diagnosis based on light and electron microscopy were said to be most consistent with a "Mitochondrial Encephalomyopathy such as MELAS syndrome."

During this hospitalization, I did not know, who I was, who my family was, nor where I was, or why I was there. I was about 1 week from being discharged to a nursing home, when I began to improve mentally and physically where I could be discharged home, with aggressive Physical, Occupational and Speech therapies. I had attempted to go back to work approximately 6 months later, as I was walking and talking. During this attempt to return to work as a Workers Compensation Case Manager for American Family Insurance company, I was approached by my boss, approximately 3 weeks after, and I was informed that I was performing at a rate which was inconsistent with employment. And it was recommended that I go back out on Disability, which I did.

Several months later, I had a formal Neuropsychiatric Evaluation done by Dr. Bell, at UW Madison, for which he opined that "I demonstrated some cognitive impairments in the context of intact verbal abilities., and although his deficits are mild, and he retains some cognitive strengths, these Neuropsychological deficits are considered of sufficient severity to significantly affect his occupational skills and sufficiency."

I have a host of clinical data which prove this effect of lipitor, and I had enrolled in a Statin Effects Study, through the UCSD, run by Dr. Beatrice Golomb MD, PHD, who has opined, on or about 11/2006, after review of my medical records, that Lipitor was the likely causal contributor to my diagnosis of MELAS.

If you have suffered cognitive impairments or were diagnosed with Holes in your brain or MELAS please contact me at crandreww1999@yahoo.com

After I had been on 20 mg. Lipitor for about 3 months, I experienced a very tender left armpit. That was soon replaced by soreness and pain in my left triceps. I also experienced soreness in my left leg biceps when riding in a car for any extended period. I complained to my doctor. He replaced Lipitor with Simvastatin-10 mg. That did not solve the problem. Following my own research, I began taking 100 mg. of CoQ-10. That solved the problem within one day. For further information, Google, "statins and CoQ-10".

I too am amazed to read all the comments about statins. I have taken statims for years (Lipitor, Crestor, Vytorin,etc). The last was Vytorin. For the past 1 1/2 years, I have had severe pain in my shoulders down into my arm muscles and recently my neck and collarbones. I became ill with flu like symtons and did not take my Vytorin for 5 days. On the 5th day, I realized I wasn't hurting like I had been, and have not taken it since and don't plan to. My pain was so severe, I was taking pain meds twice a day at least plus a regular dose of Aleve. Thank you Graedons for informing the public since our doctors ddon't seem to.

I am a South Florida female, now 62, who started taking 10 mg daily Lipitor in feb 2003, for high cholesterol. Lipitor worked. My cholesterol dropped from 270 to 207.

Early 2006, I began feeling unsteady in the mornings so started taking Lipitor at bedtime, instead. Also began taking CoQ10 along with it.
Then I started feeling oddly foggy, mentally, but was under a lot of stress at home, so discounted it.

At least twice I had transient episodes while driving locally that I didn't know where I was or why. I became clumsy, dropping things and stumbling. Had a bad fall in February and injured my left knee. As the left leg got better I realized I was also limping on the right leg. Soon I had to use a cane to get about and needed to use my arms to get up out of a chair. I was slurring my words. I sounded drunk and was tired all the time. I couldn't turn keys or door handles. Emotions were near the surface. I would burst into tears over a newspaper cartoon.

Before long I was so weak I could only stagger around my house by hanging onto the furniture. Still no pain whatsoever, (apart from horrible nightime cramps and spasms throughout my whole body) just increasing muscle weakness and being in a constant daze. I was having difficulty swallowing and often aspirated bits of food. I began worrying about having MS or ALS, or having had a stroke, so made an appt to see my doctor.

Suddenly the possibility of it being the Lipitor dawned on me at last and I stopped taking it the first week of April 2006.
Within a week of stopping the Lipitor I felt so much better and brighter. By the time my doc's appt came around in May my mental fog was lifting and I was walking a bit better, but dragging my right foot. My right calf was wasting just as my right thumb muscle had. My doc diagnosed a dropped right foot and a claw hand and referred me to a neurologist. She also sent me for a brain tumor MRI, which was negative.
I had for years been waking at 5am every morning to urinate. Within two weeks of stopping Lipitor I was sleeping through till 7am and having no problems during the day. Bladder muscles must be able to regain their strength quickly. I also noticed that the dry mouth that for years had plagued me was gone. Instead of constantly chewing gum and carrying bottled water I had regained a normal saliva flow, something I had completely forgotten ever having. The muscle cramps completely stopped, and also the awful nightmares.

Two months later I seemed to reach a plateau in improving, so decided to see the neurologist in July 2006. He dismissed my theory that it was Lipitor, saying he'd never such seen such side effects and sent me for two MRIs of my spine. The neurologist thought it was probably ALS as he observed some muscle twitches and referred me to a specialist in Miami. I was convinced it was the Lipitor and hoped no permanent damage had been done and that I would eventually regain muscle mass and strength.
Lipitor is a poison derived from toxic mold -- like red yeast rice. And though it may be safe for some, I believe there are many people suffering needlessly from taking it and the other statin drugs.
I was lucky enough to have a home pc and discover others are in the same boat, but what about all the old folk and working moms and dads taking statins who don't have the time, ability or resources to research this? They are alone in their fog, stumbling and slurring, many being diagnosed with dementia and neuropathies, having no idea that their medication is causing such horrible side effects.

Yes, my cholesterol shot up without Lipitor, but I went on an organic, glutamine-free diet, mainly vegetables, fish and fruit, oatmeal every day, CoQ10, Omega 3 and lots of vitamin C. Cholesterol is the least of my worries now.

September 21st 2006 I was diagnosed with ALS after an EMG. I am now housebound and need a wheelchair, My speech has gone, can only swallow thick soups.
I'll probably be dead before anything gets done about statins.

I had my first heart attack the summer of 2000. The cardiologist put me on 10 drugs, including Zocor, Baycol, Plavix, ToprolXL, Cozaar and Lipitor. Some of the drugs are statins, some are beta blockers (I don't even try to remember which). All of them made me violently ill. Fever, nausea, vomiting, diarrhea, frequent urination, headaches, sore throat, trouble swallowing, coughing-deep in my chest, tiredness, loss of short-term memory, stomach pain, pain in legs and back. My hands would swell up and itch, then the skin would crack open and bleed. My hands got so painful, that the Dr. prescribed Lortab to give me some paiin relief. I spent thousands of dollars on Dr.s, dermatologists and medications to get soem relief. I got so weak, that I couldn't even pick up a 20 pound bag of potatos.

At times, I went off the drugs in an effort to get some relief from the pain and nausea, but the cardiologist insisted that I would not make it through another heart attack. (I had four heart attacks in the past 7 years) and so I would go back on the drugs he prescribed.

Two months ago, I went off all drugs. It took several weeks before I started feeling better. My short-term memory is coming back and I am essentially pain-free.

While on the statins and beta blockers, I still tried to swim but was only able to swim three lengths of the pool before being too exhausted and out-of-air to continue. I am now swimming six to eight lengths and stop only for a short rest just because my muscles are tired.

I am grateful that my body was so sensitive to the poison that I was feedng my body with those statin (and beta-blocker?) drugs. The incident that got me completely off the drugs was interesting. One morning, two months ago, I mistakenly took a double dossage of the statins I was still taking. I immediately got violent ill with the same symptoms mentioned above. I was even too weak to get out of bed to go to the hospital, as I had done several times before. I just stayed in bed and didn't eat anything for several days and started getting better. I realized that if a double dose was that devastating to my body, then a single dose could not be good for it either. That is when I realized that the statin (and maybe beta-blocker) drugs were killing me.

I am now taking aspirin for my heart, some COQ10 and fish oil )Omega-3) for my arteries and ginger to control inflamation. I will never go back on those medications that the cardiologist prescribed.

I have been on Lovestatin for several years. My blood work just came back with my liver function way abnormal. My doctor had me stop the statin immediately. She had me go today for a sonogram of my liver. This is really scaring me. I've always been so healthy. I didn't know statins could effect you in such a bad way. My cholestrol has shut back up from 174 to 248 but I'm not going back on any type of statin.

I had taken ZOCOR for 6 yrs+, On Jan 20,2006 I was admitted to Hospital after experiencing severe muscle pains in arms, legs upper body. After 2 weeks in hospital The diagnosis was Rhabdomyolysis secondary to statins (Zocor). I need intense PT for 6 weeks as I was released from hospital in a wheelchair, eventually went on walker, the a cane. I can never take statins ever. Today I cannot walk any length of time without pain and fatique. Hopefully the FDA will take the compaints seriously for those of us who have suffered permanent disability, because Physicians DO NOT.

I have been on Lipitor, Zocor & back on Lipitor over a period of several years. I have severe pain in my hips and can barely walk 4 or 5 houses down the road. I'm exhausted climbing stairs and can barely get one foot in front of the other. I'm 73 and play golf twice a week and as much as four times a week when in Florida for 3 months. Lately I'm experiencing involuntary twitching and jerking also I know my memory has been failing. I'm now taking myself off Lipitor and hope these symtems will reverse.

within a month of taking lipitor, i developed back pain and weakness in my right leg, one year later the pain had increased to the point where i couldn't walk upright. That was 5 years and 20 some doctors ago, not to mention several different "block" injection treatments and spinal disc fusion

none worked, i am still in extreme pain every day, Getting out of bed in the morning is the worst.
the pain in my back and numbness and weakness in my leg gets worse by the day.
I am now disabled.

I was put on statins, first Lipitor approximately 5 years ago. After complaining about severe muscle aches a "muscle enzyme" blood test was ordered. My muscle enzymes were apparently "through the roof" and it was found that I also suffered from thyroid disease. The Lipitor was discontinued. Having moved from the northeast to south Florida my current MD prescribed Crestor even though I told her of my past problems with Lipitor. After being on it for 8 months my muscle aches got worse. I asked her to order a muscle enzyme test and was taken off Crestor immediately. I've now been off Crestor for 5-6 weeks and still suffer severe muscle aches and nerve problems in my legs. The pain hurts worse at night. Thanks to everyone for sharing their stories, now I know I'm not crazy.

After taking statin drugs for 12 years, my husband's legs became so weak that he was not able to walk. He was diagnosed to have Polimyositis, which he was thoroughly convinced was caused by the Zocor and the statin drugs he had taken. This was in the early nineties.His doctors were not convenced that the statins had caused this. By 2000 he was taken off the Zocor mostly by his own wanting and confined to a motorized wheelchair. Beverly

I tried Lipitor and Crestor and had to stop after 2-3 weeks due to extreme muscle pain. My doctor never warned me regarding the side effects. I am now taking Colestipol and have had no side effects like the statin drugs.

I am so amazed to see my story in print tonight. I knew many yrs the dangers of statins, but since I was doing ok, I have been on Zocor 10mg for over 7 yrs. I always read the warnings on the drug packaging & had an older lady friend who knew the dangers of statins also, but we all were concerned about out our cholo count. Mine in ok, but 5 yrs ago, I have developed peripheral neuropathy in my feet and the last 3 yrs I get cramps in my calfs while walking. I have been getting increasingly more balance problems and talk about short term memory, scary, and the past few mos, have noticed my spelling has gotten poor.

My drug co. called the dr. 1 mo ago to substitute zocor for simvastin , but I have not taken it. When I was on lovastatin I would get diaherra, so that is why I took Zocor. It would bind me, I just seen the dr. and said he precribed Questin w/O.J. since I had my gall bladder out in 1975. I find it harder also like the rest to get up from the stool and chair, and feel like at 66yrs I am not living a good quality of life. Now this ALS is a scarry issue, as far as Dr.'s goes, I personal have left 3 dr. in the past 3 yrs.
I feel there is always another dr. out there to take my money, and will NOT listen to me. I just fired my new neiroligidy. Please excuse my spelling.
I hope the FDA hears this and I pray for all of the posters before me.
thanks for listening

I wish I had known all this information six months ago. In March my 90 year old mother was hospitalized (again) with cardiac and CHF problems. The cardiologist realized that she was not and had not been taking Lipitor. He put her on 80 mg/day. She had always been remarkedly, exceptionally active and alert, but slowly began diminishing in nearly all aspects. In May she was so weak she had to be hospitalized again. After two weeks she was transferred to hospice care and she died June 29. After reading all these comments I am wondering if this was not a direct effect of taking such a high dosage of Lipitor. Wake up, FDA!
I have suffered muscle weakness and pain for years and recently started having tremors in my right hand. I have taken Lipitor, 10 mg/day, for years. But no more! Thank you, Peoples Pharmacy.

My husband passed away 3 years ago from ALS.
He had also been on Lipitor. This is the fist time I have heard that it could be the cause.

My Father took Lipitor for high cholesterol for a few years. He complained about fatigue, muscle aches, and leg cramps. One day while visiting my home, my parents and I made arrangements to meet downtown at a certain time. My Mom was riding with me and my Dad was to meet me there. My Mother and I were sitting on a bench chatting. My Father, who was sitting on the end of the bench was looking very strange. He looked at us dumbfounded and said "I don't remember coming here."

We weren't sure what to make of it. He said again "I don't remember getting here". I asked him what was the last thing he remembered and he said sitting at my dinning table speaking with my wife. This was something he had done maybe an hour earlier. He went on to say that he did not even know where he had parked the car. I went around town to find the car, he was totally unable to help me... did not remember anything.

He went to the ER and they suggested he might have had a "mini stroke". He was given blood thinner and told to see his own Dr. when he returned home. His Doctor could not explain the episode but did say that he did not have a stroke and did not need blood thinner. He later had another memory loss episode.

Lipitor made him feel so bad that he quit taking it and began to feel better. I later read Dr. Graveline's book and wonder if lipitor was the reason behind his memory loss. He was 66 when this happened.

[editor's note: This experience sounds very much like the Total Global Amnesia (TGA) that Dr. Graveline describes in his book. We have heard many other similar reports over the years and most were linked to a statin-type medication.]

My mother died two and a half years ago from complications related to ALS. She had been on Lipitor for about a year before she began the slow decline that led eventually to her death. She maintained until her passing that Lipitor had caused her ALS. After reading your postings I now know she was right. Please help prevent any more unnecessary ALS cases.

I must have read all your posts and feel we all have the same thing in common on these statin drugs. Tired, weak, loss of muscle tone, strength, aches and pain. I was put on the drugs when they first came out around 40 years of age and now a I am 60. The doctors will go through everything get that happy number. One doc had me on 80 mg. zocor and he was voted the best doc in our town. Well after reading posts of web md and on here I find that we are growing and may not be a minority in this.

The drug companies are making millions on us people and don't care about how we feel just get the number and that say its working, youre still living :) Not quality living

My advice from all the research is to consider the asian dose which is the smallest does of any statin. I take crestor 5 mg and feel better but not as good as I feel without taking anything. Also make sure you get the ck test done at each blood test to see if there are any muscle problems. I use to fail this test and now I am passing it with the low dosage of crestor. I have not stopped taking the statins because I am a classic case of heredity type cholestorol of around 400 if not medication. I also have a family history of a brother and sister who died of a one time heart attack. So right now I feel trapped because I can't stop using the statins in fear I will fall over. But at the same time I can't seem to feel good, keep my tone and I have stiffness and pain in my arms and legs with numbness at times.

If anyone wants to write me concerning What I have posted please do at pocvalfm@hotmail.com Take care everyone and don't over do it on the dosage and please keep writing these so someone will do more research on the safety or non safety of the statin drugs.
Rich from NC

About two years ago, my cholesterol was so high that my doctor said I was a walking heart attack waiting to happen.

The doctor put me on Lipitor, which gave me severe headaches and muscular aches in my back and legs. Then I was switched to Tricor, which was easier on my muscles, but did not do anything to lower my cholesterol. Then I was put on Crestor, which brought my cholesterol way down. However, after reading all of these testimonies, I am realizing how much the statin drugs are still affecting me.

I am extremely tired all day and night. I continue to get headaches & muscular aches. This winter, I had a problem with my foot and couldn't walk on it. The doctor said it was plantar facietis, but now I wonder if it wasn't from the statin drug. I am a couch potato after work, and then get up around 10 pm to go to bed. After all that laying around and sleeping, I still have trouble getting up in the mornings. I used to be a workaholic around the house. Now, family members help me with jobs that I used to do by myself. One would think I was 20 years older than I really am.

I'm 60 years old, female, with 20+ year history of adult onset diabetes, insulin-dependent for about 12 years now. My cholesterol level had been inching up, so my doctor prescribed Zocor (simvastatin) 10 mg daily as a preventive measure. I took it for about 2 years without any of the muscle aches and pains I had been warned about. However, I was having occasional episodes of difficulty swallowing, which I did not attribute to the statin. I was concerned about the possibility of MS, however.

Last winter I noted darkening of my urine, but thought it was possibly caused by a urinary tract infection or from not drinking enough water. I started a job in Jan. 07 and had some problems with hiking up the hill to my workplace and with going up stairs, and attributed it to not being physically fit. Within 2-3 weeks, the muscle aches subsided a great deal. But then I was so tired all the time, so mentally fuzzy, sleeping all the time, not bright and alert. I thought perhaps it was caused by laziness, old age creeping up, Alzheimers, and all kinds of horrible things.

Then one Friday I forgot to get the prescription refilled and didn't take it for a few days. On the next Monday evening I had a little spark of energy. On Tuesday morning I felt kind of okay, and continued to feel better throughout the day despite a horrible day at work. On Wednesday morning and throughout the day, I felt better yet. On Wednesday evening, I looked up Zocor on the internet and was appalled to find out that it could indeed cause the kinds of symptoms I had experienced. On Friday I was unfortunately terminated from my job because I had simply been unable to do all the multitasking required of me. I cared, but I didn't care, because I was feeling so much better. I truly had not realized how godawful I had been feeling till I started feeling like myself again.

A physician I know told me the following weekend that I had probably been 4-8 weeks away from terminal kidney or liver failure. As most people realize, healthy kidneys are particularly important to people with diabetes! When I saw my doctor, she asked if I tried taking the drug again to see if the symptoms recurred. I responded, "Do you think I'm nuts or something? This wasn't a matter of having a little headache or some minor side effect! It was a life-threatening situation." Follow-up tests for muscle, liver, and kidney damage were negative, thank goodness. Now I do need to schedule my routine annual visit with her, but I'm finding myself reluctant to do so. I will NOT take any cholesterol-lowering drug again.

I've started taking Co-Q-10, and I'm exercising more, and I'll be looking into more natural ways of lowering my cholesterol. I also told my doctor that I would rather lose a year or two of my lifespan to cholesterol than ever to feel like that again.

Linda Wyeth
lindawyeth@yahoo.com

I was taking Zocor for a number of years when I developed leg cramps that felt more like seizures particularly in the upper thigh. Upon standing I could not move the legs for several seconds -- weakness and pain. The leg cramps were excruitating at night.

Doctors did not link the problem to medication. I did research on the Internet and saw the correlation linking the muscle deterioration to the statin drugs. I discontinued using Zocor and the problem was alleviated.

The doctor then tried different statin drugs but all with the same result. I am left with weakness in the legs. I still have high cholesterol but would rather deal with that than the possibility of becoming crippled from the drug to bring it down. I'm thankful that I did my own research and found the answer to the problem. Let's face it we're the best judge of our health.

My uncle was diagnosed with ALS after taking Zocor. He was in his late 40's when he initially started to notice weakness in his arms and shoulders. In 1998, he died from ALS at the age of 56.

In the early 1990's, The ALS Society told him they thought his ALS could be related to the Zocor he was taking. He was taken off the Zocor but continued to decline until he died.

It bothers me that it has taken so long to make the connection between ALS and statins in the medical community when The ALS Society was suspecting it in the 1990's.

Our family has a high incidence of high cholesterol, and it scares me to hear stories of family members who were prescribed statins without their doctors discussing changes in diet and exercise with them.

I had bad Sciatica for years.March 2001 had an Laminectomy. Good recovery. Started to play golf again. Started Lipitor. Had a relapse. Thought it was failure of susrgery. Took second Laminectomy - to no avail.Took Spinal fussion3/05. Usesless. Doctor sais it was not Lipitor. Stopped taking it and for the next 10 days I had the most unusual sensations in my body! It just drained out of me. I felt stronger every morning. STARTED TO WALK A MILE DAILY!! Relaapsed after a few weeks. I can hardly move for the last 3 years. Orthopedics say I have bad Stenois. I believe after taking LIpitor 8 years it kept me from rehabilitation.

I took Pravachol for a couple of months -- during which time I developed severe pain & weakness in both legs, but mainly my right leg. I required help to get up from a chair, had to purchase a shower chair in order to take a shower, began to use a cane, then a walker then a wheelchair. In short order I was referred to orthopedists, neurologists, and ultimately a surgeon.

Fortunately I remembered something about leg pain & statin drugs,and I stopped the Pravachol. Within a month, I was free of pain and my muscle strength is coming back. I consider myself lucky because I have heard of many people who took statins for a long time before they stopped, and their strength did not come back.
On one of last years' Peoples' Pharmacy shows the guest cardiologist joked that statins were so beneficial that they should put them in the water supply. Well, time tells us many things doesn't it!

My father was taking Zocor and Tricor for high cholesterol. Within months his speech started to slur. Began to have trouble swallowing. His doctor sent him to a neurologist who tested him for ALS. Test came back inconclusive.

Symptons worsened and we asked both doctors about the statin drugs. Both doctors dismissed us.

Eventually my dad could not talk, eat or swallow liquids. He died at the age of 68. A healthy man all his life.

I started taking Lipitor in 2002, 10 Mg.

At that time I was 57 years old and was using a stationary bike almost every day. I have been athletic all of my life...football and baseball in HS, started jogging at age 36 and continued until joint problems forced me to bike.

In july of 2004 I was getting off of my bike and noticed that I couldn't wiggle my right foot out of the stirrup. I went to my family Dr. and he did a neurological exam and could not find any symptoms of stroke so he referred me to a neurologist. I went through a battery of tests in his office and he suspected a tumor. After the initial MRI of the brain, which showed no tumers or leasons he ordered MRI's of the spine. Again, nothing. His diagnosis was that this was something I was born with and the brain compensated while I was young and now it has manifested itself. After several months of thinking about this, I asked my family Dr. to refere me to Johns Hopkins. I saw a neurologist there and he suggested a mylagram. I really did not like the idea of a mylagram so I went to another neurologist closer to home. He did an EMG and told me that I had damage to my L-5 nerve and that the L-5 muscles had been damaged. He said that the the nerve mylam will regenerate at the rate of 1 Cm per month and that the muscles around the damaged ones could be strenthened to compensate for the damaged ones. My wife suggested physical therapy so we hired one to come to the home. I purchased all of the equipment necessary for the exercises. We are fortunate to have a pool so that in the summer I can do pool exercises.

My leg was getting worse so I decided to go back to the neurologist at Johns Hopkins. After he examined me he told my wife and I that he feared that I had ALS and immediatly ordered an EMG, which was done that same day. The doctor administrating the EMG was very pleased with the results and told me that my nerves and muscles were "perfect". When I asked about the L-5 nerve he said there was nothing wrong with it.That pretty much ellimated the ALS diagnosis but put PLS at the top of the list.

I was still taking Lipitor but decided to go off of it and go on Zetia. A little over 3 months after being of of the statin my gait improved tremendously. I am able to jog very slowly whereas before I couln't even walk fast. My wife did extensive research and found that statins block Cq10. She suggested that since the body starts producing less Cq10 after age thirty that I take 300Mg per day, along with the other suppliments that I take.

I am convinced that Lipitor is the cause of my problem. Although I am certainly better than I was, I still have weakness in the right leg. I am not stumbling like I was before going off of Lipitor. My next appointment at Johns Hopkins is the 15th of Aug. and I am anxious to hear what the neurologist has to say. I still may not be out of the woods but I certainly feel better.

I urge anyone with the symptons of PLS or ALS to get off of statins and to also get more than one opinion. I also urge the FDA to take action on statins and ban them until a study can be completed.

My doctor prescribed a daily dose of 40mg of Lipitor a few years ago for my cholesterol, which was about 275. After two months, I began to feel disconnected from my brain, disengaged from my family, and had significant short-term memory loss. One day, my manager asked me where I'd taken my family on vacation the previous week, and I was unable to answer the question. Right after that, I did some research on memory loss and statins.

I took myself off of the drug, and within a week, I regained most of the cognitive function that I'd lost. I have since lowered my cholesterol through sensible food choices, fish oil, and flax seed oil. I decided the supposed health benefits from statins are not worth living a life without my memory.

I am 52, and was put on Zocor (5mg). After a few months, my doctor changed it to 10mg, and a few months after that, I started having a hard time getting out of bed. I have always been very active, and attributed it to "old age". I continued to get worse, all my muscles aching, and I did not realize it was from the statin until I went back to the doctor. When I told him, he took me off right away, but he wants to put me on something else. Not sure I want to go through this again, but it does not seem like I have a lot of choices!

I have been off of statins (Lipitor, Vytorin and Zetia) for a year and a half. My joint and muscular pains are 75% less severe since I stopped statins on my own. My doctors told me that the pain was not caused by statins. Death would have been kinder than the hell I experienced. I would rather live with elevated cholesterol than take another statin.

I took Zocor for two years before it attacked my muscles. I was put through many tests, and my doctor sent me to a specialist who confirmed that it was the Zocor. Today I cannot climb stairs - I can barely walk through the house, and need help to keep from falling. It has ruined my life. No pain medicines help.

My mother was put on Lipitor a number of years ago, and developed a severe muscle disorder that lasted for two years. She could barely walk, and her arms hung limp by her sides. She was in a lot of pain all of the time.

It was nearly two years before anyone thought it might be the Lipitor. In fact, I had to call it to her attention, and ask her to talk to her doctor about the possibility of Lipitor being the culprit. Sure enough, when she went off the Lipitor her muscle weakness, pain, etc. began to ease.

There is no question Lipitor was the culprit. To this day, we have all wondered if permanent damage could have been done, because she still suffers from some residual muscle pain.

I am a 61 year-old woman who was always very, very active. One day while at work, I felt very tired. I was sent home, and contacted my doctor. He immediately put me on Lipitor due to my elevated cholesterol level. I took the drug for approximately 6 years. During that time, I was plagued with severe tiredness, severe leg cramps, muscle aches and pain in my back. I told my doctor, and he put me on Crestor and then Zetia. Finally, I could hardly walk, and when I began slurring my speech, I took myself off of all drugs.

Since then, I have had severe equlibrium problems, and I am losing my ability to speak. I used to have beautiful handwriting, and now I have a terrible time writing at all. I also have a problem with swallowing, and unless I use THICKET I choke on mere liquids. I have been diagnosed with PLS. I also suffer from spasticity.

I refuse to take any cholesterol meds as I would rather take my chances with high cholesterol than live with the severe pain and side effects that I have experienced. I cannot believe that so many people have had such devastating results by using statins.

My husband was on Lipitor for several years. He complained of his muscles hurting but continued. When his speech became slurred and he had trouble breathing, we went to several doctors, had numerous tests, and 9 months later, he was diagnosed with ALS at the Cleveland Clinic. His was the bulbar type. He died in Jan. 06.

I was taking Crestor, and my feet started hurting so badly when I would stand after sitting or lying down that I would hobble like an old person. I stopped taking Crestor two weeks ago, and my feet are already starting to feel better.

My wife started lovastatin in May 2003, at which time she was playing tennis twice a week and golf three times a week. Gradually during the next 12 months, she began to lose muscle strength and stamina, and had occasional aches and pains.

In May 2004, our family doctor assured us that if her problems were due to the statin, they would have shown up within the first couple of months after starting the drug. Her blood tests were normal.

She went off lovastatin for a period of 3 months twice in the next 24 months, but with no improvement and some further deterioration. She stopped playing tennis and her golf was reduced to 9 holes once a week. Our physician still insisted her decline was not related to lovastatin, but we stopped it anyway at the beginning of 2007.

Last week, a neurologist diagnosed her as having early Parkinson's Disease. I'm wondering if you have had other comments regarding statins causing Parkinson's Disease?

I started taking lovastatin two or three years ago, and developed severe lower-back muscle pain, which neither the doctor nor I associated with the medicine. I could not get out of bed one morning from the very severe pain. I researched statins, and insisted that it was causing the pain. I then changed to simvastatin per my doctor's recommendation.

I had steadily deteriorating symptoms of "getting old," like lower back pain, numbness in my hands and feet, and tingling in my extremities. Then I suffered a transient global amnesia experience (which was fortunately witnessed by my wife). Once the doctor suggested it had been a TGA, I researched it, discovered Duane Graveline (spacedoc.com) and was stunned by the evidence of statin side effects! Thank goodness for the internet!

I had unknowingly experienced many of the side effects. In addition to the above I had memory loss, itching of arms and chest, toe cramps and tiredness.

I have been to a neurologist, and had my head examined with an MRI, EEG and memory psychologist.

I stopped the statin, and most side effects disappeared in a couple of weeks, although I still have some memory loss concerns.

I'm also suspicious that two bouts with severe vertigo requiring ambulance trips to the hospital might have statin roots, but I've seen no anecdotes about vertigo.

I've related my experience to many, many neighbors and friends. Most take statins and most have some symptoms, the most common being muscle pain.

I will never take statins again.

At various times, doctors have prescribed Lipitor, Crestor, or Vytorin for me. I have experienced bad results with all three.

Lipitor and Vytorin caused severe nerve and muscle aches which began to immediately subside when the drug was discontinued.

Crestor, on the other hand, caused emotional distress which I would have believed was my imagination had a friend of mine not experienced some very similar symptoms. Normally, a cheerful and upbeat person I spent one full day crying and could not attribute the sadness to anything in my life situation. It was my husband who suggested I had not been feeling so badly until I began the statin, which I then discontinued, and returned to my usual positive outlook.

My father has been taking Lipitor for a few years. After he had surgery for a broken neck, and hospitalizations for c-dif infections, his legs began to weaken until he could no longer stand or support his own weight. Because of this, my mother could no longer care for him at home and we had to put him in a nursing home.

Over the next few months, his left arm and hand progressed similarly until he could no longer use them. Many tests have been conducted and specialists consulted, including neurologists, with no diagnoses. They did rule out Parkinsons.

I researched and began to suspect ALS. I then began finding info on the Lipitor connection and am flabbergasted that all of these Hopkins doctors have never considered the possible link. I am livid. I will be talking to my father's doctor asap to stop the Lipitor and begin CoQ10 and other possible treatments that may reverse his neuromuscular problems.

My husband has been diagnosed with MELAS since a muscle biopsy in 2002 and many thousands of dollars of diagnostic work-ups for muscle atrophy, multi-organ system disease, cognitive decline, etc.

He was diagnosed with Cornorary artery disease at the age of 40 (1997) after his first heart attack, and found his triglyceride level to be around 1400. So he has been on a list of statins (Lipitor, Vytorin, Tricor, Niacin at high doses, Zocor, etc, etc, etc.)

He was an active paramedic who became disabled, and now has to use a wheelchair, has had strokes, stroke-like episodes, lactic acidosis, and has become terminal. His ejection fraction has gone from 55% to 35% after 4 MIs and 13 stents. I pay $1000 in out-of-pocket expenses a month for his medicine, which includes high doses of the vitamin cocktail: CoQ 10, carnitine, riboflavin, biotin, thiamine, vitamin b12 injections. His DNA study was inconclusive twice (at $4500 a piece), which to a neurologist is just as good as positive.

So after 12 years of statins, he has deteriorated to this point. Why is this not published for the medical profession to at least take into consideration? I realize as a nurse that my husband probably could not do without the statins, as exercise and diet did not help with his family history of CAD and hypercholesterolemia and hypertryglyceridemia, but . . .

My husband is in such severe pain all the time that this just hurts my heart that these drugs could be the root cause!

I was a healthy 46 year-old white male. I went to the doctor in the spring of 2006 for a checkup, and was perscribed generic Zocor. Within 30 days, I began having pains in my elbows and knees, and I had constant muscle pains. I never even thought that the Zocor was responsible, and my doctor never mentioned any such issues.

After 5 months, I had to make a visit to the emergency room due to extreme muscle pain. My initial research on the internet made me suspect the Zocor, so I stopped taking it immediately. I expressed this opinion to the emergency room doctor, who brushed off my suggestion.

I returned to my doctor with my concerns, and he was very annoyed at my suggestion that Zocor might be causing this problem. He told me not to take medical advice from anyone who is not a doctor, said that the side effects are "rare," and told me that mine are due to my getting older. He did a blood test and mailed me the results. He has not expressed any desire to follow-up, or even to contact me with regard to further check-ups.

It has been a year since I stopped taking Zocor, and I am still working to get back to where I was before taking the medicine.

I took Lipitor for about 5 months 10 years ago. Shortly after starting it, I began experiencing excruciating leg and foot cramps. They were so intense that I feared several times that the tendons and/or muscles might tear. My calf would be rock hard and totally flat. My foot would pull upward nearly touching my shin. My toes would bend underneath and touch the balls of my feet.

I had not been warned that this could be a side effect, and never connected the two until one night while asleep, the word LIPITOR lit up my dream as if in neon. I stopped taking it the next day.

Shortly thereafter, the horrible cramping stopped, but to this day I still have occasional leg and foot cramps. I have also developed a whole host of disabling disorders such as fibromyalgia, psoriasis & psoriatic arthritis. Until the Lipitor I was healthy and strong. Now it's sometimes a struggle to make it through the day. Nearly every doctor that I've seen or discussed this with has dismissed the idea that the statin is the culprit, but I'm convinced that it is.

My dad has taken every statin on the market for nearly 18 years. The reason he's tried them all is that after a very short time on any one of them, he also develops debilitating cramps in his legs and feet, as well as memory loss and personality changes, all of which disappear with the cessation of statin use.

It's not a hereditary thing, because I'm adopted. He's just another victim.

I realize that statins may be safe for many people, but I also know that they're a huge money maker for Big Pharma. I think that it's criminal that these types of side effects have been downplayed and dismissed by the medical profession. A lot of people's lives have been changed forever by the use of statin medication.

I was prescribed Simvastatin by my family physician. After I'd been on a low dose for six months, he doubled it.

I started noticing muscle pain, and couldn't keep my balance well enough to ride my bicycle. Then my liver enzymes went crazy, and I was accused of drinking alcohol. I don't drink, and haven't for the last five years.

I complained to my doctor, and he took me off of the statins. My health has improved a little since I stopped taking them.

I retired in 1977 and got involved in hiking and cross country skiing and was in great physical condition.In 2001 my cholesterol showed some sign of elevation and my doctor put me on Lipitor. In early 2002 I began to get muscle cramps mostly in the legs. Late in 2002 I was switched to Crestor (another statin). In late 2003 muscle fatigue set in.

July 2004 I started a number of tests and by November was diagnosed with ALS. Coming from a man who could walk 20 miles a day to now being wheelchair bound and still deteriorating has left me very suspicious that statin drugs triggered this illness, especially in light of all the other testimony already registered. My doctor at my ALS clinic says that ALS cases have shown a major increase recently as has the use of statin drugs...coincidence...not likely.

I am a 45year old male. I come from a long family history of cholesterol, and have always been a bit heavy.

I have been on Lipitor for I believe close to 10 years. Several years ago I complained about random muscle cramps, aches and what sometimes felt like flu-like symptoms. I had read some of the warnings that Lipitor may have a side effect of muscle aches. My doctor snubbed the possibility and suggested I take motrin when the aches got too severe. He suggested with my history, that the benefits of Lipitor far out-weigh the aches.

About 5 years ago, I developed a progressive tremor in my hands. It seemed worse if I was doing any small task like work or even using small hand tools. It then became more regular so my doctor suggested I see a neurologist. He ordered a number of tests including ct scans, blood work, nerve testing and muscle tests. The final although not completely conclusive diagnosis was Neuromyotonia. He referred me to Columbia Medical Center and a special Neurology area there that concluded his diagnosis. The problem was some of my symptoms did not completely seem to be in line with this rare disorder. In addition, the various treatments seemed to make the symptoms worse or cause other side effects.

My neurologist had forwarded my case to the National Institute of Health Bethesda MD to be considered as part of a study on this disorder. The doctor there concluded that although I did indeed exhibit some of the symptoms, the lack of others and/or the varying severity seemed to indicate I had been misdiagnosed. This meant I could not be part of the study he was conducting. He suggested I had been on so many medications for so long, that I may want to gradually taper off everything and see how severe my symptoms would now be if untreated. I decided on returning home I would seek another opinion and yet another neurologist concluded I may just have a tremor disorder which would be better treated by a different beta blocker. Never had any of these doctors suggested stopping lipitor. I recently saw my regular physician who suggested I may want to try stopping the lipitor for a while.

Upon reading all the other cases as cited here, I have decided to give it a try. If I see a change, I will seek another means of lowering my cholesterol. I just hope I have not done any long term damage having been on lipitor so long. Thank you for your work on providing a vehicle for people to learn about these type of problems and the experiences of others.

My husband took statins for 8 years following quad bypass surgery. He experienced TGA [transient global amnesia] on several occasions, stopped all statins 3 years ago, but is still experiencing persistent cognitive 'processing'. PET and MRI scans were normal.

MOM HAD ALS:
My Mother was on Lipitor.She had (Bulbar Palsy ALS).During her short journey of fourteen months. We took her off the Lipitor because in the news they stated Lipitor could cause nerve damage. This was probably the year 2000. At that time her cholesterol was lower. tomatojuice@filertel.com
I wrote a book "Tomatoe Juice a tribute to my mom" it is our journey through Bulbar Palsy ALS. I do mention taking her off the Lipitor in the book.

I was on Lipitor for about 8 months. Within that time perdiod, I began to experience severe pain in both elbow joints. The simple task of transferring damp clothes from the washer to the dryer became impossible for me to do. I was also starting to experience pain in the bones of my feet and in the muscles of my legs.

I stopped taking the drug. It didn't happen overnight by no means, but the pain eventually went away. We moved to another city. Years later my (new) doctor said that I needed to lower my cholesterol. I've been taking Crestor for about a year. I now have neuropathy in my right foot and I feel things in my right leg muscles that I can't easily describe. I don't know where to turn. I feel like I should be seeing a specialist but, I'm a single parent and I can't even afford insurance. Any words of advice, guidance would be greatly appreciated. Thank you

My Lord, a 78 Senior in November what a way to make my Sunday, I've read comments and articles about statin type Rx's and have been on a good share of them myself over the years [first heart attack in 1985]and now understand my complaints going unanswered. In fact just last visit to Doctor made comment to him I surely know my body better than he does. Bless you all and I will have additional words with him [Dr.] shortly.

When I read about Dr. Edwards findings I nearly flipped. It took many months and finally a direct call to the FDA to get Pfzier to accept a report from me ( a licensed physician) about my experience with Lipitor. I began to have severe lower leg pain for no obvious reason a few months after taking Lipitor and the pain would stop when I stopped the Lipitor and then return when the medication was resumed. This happened 3 times so i stopped the medication. Sadly my CPK (call it CK now) was elevated and remained elevated and then I began having muscle wasting, atrophy and increasing weakness...all with normal ESR and normal anti jo test. Finally I began having changes in swallowing, breathing and very limited walking and NOW FASCICULATION in both calf muscles!!!! My Medicine textbook says and I quote, muscle wasting and weakness and fasciculations are pathognomonic for ALS!!!

My EMG did not confirm this but I certainly have an ALS like syndrome...When I read that Dr. Edwards found 43 cases in the literature I wonder if one of them is me! Please Dr. Edwards if you read this contact me for further info if I can help save someone else before I die I would do so.

Please call me or write to me Mike Gillman MD Seaford New York It was so hard to get my report filed that I am certain there are far more than 43 cases and many victims simply gave up trying to file reports!!!

I am a 53-year-old woman. I am not obese, but I had moderately high cholesterol (210), and was put on 5 mg of Lipitor, which was then increased to 10 mg. My cholesterol improved considerably (145).

But I also began to experience unexplained fatigue, and muscle pain in my quadriceps. At times, the pain would be severe. For example, just walking up one flight of stairs could cause serious aching leg pain. This is not typical for me. (I exercise 4-5 times per week.)

I kept thinking it was from working out, but then began noticing that the thigh pain would occur independently of working out (i.e., even after a week's rest). Then I thought that perhaps I was falling prey to "mass hysteria" by beginning to associate it with my Lipitor.

I discontinued the Lipitor after taking it for several years, and within a few weeks my leg pain disappeared, as did my recurrent feelings of fatigue. I felt great!

But then the doctor told me my cholesterol had risen to 190, so she put me on Vytorin (since I'd asked not be on Lipitor). Unfortunately, now my leg pain has recurred after only 4-6 weeks on Vytorin.

I'm so disappointed. I will probably try to control my lipids with diet and hope that that will be successful, because I'm of the opinion that these statins are the culprit behind my (severe) leg pain.

My husband is 47 years old, and began taking Crestor and Tricor one and a half years ago for high tryglicerides (in the 1200's, which has now come down).

In the last year, I have seen many of the symptoms listed on this page in him. He has had flu-like symptoms, trouble swallowing food, his knuckles lock up, and straightening his fingers gives him horrible pain, muscle pain including cramping and twitching in his legs and arms, now moving into his neck. He can only sleep 1-3 hours before the muscle cramps wake him up in intense pain. It seems to take very little to fatigue him. Going up and down 7 - 8 stairs in our home wears him out. Recently I have noticed he sometimes slurs his words, and has begun dropping things.

He has undergone some testing here in the last few months and they have ruled out MS. After spending a lot of time researching on the internet, my husband & I believe he has ALS, and our doctor seems to agree, but of course he has to go through all of the tests first. Our doctor is sending him to a neurologist next week.

What I would like to know is what exactly is meant by "statin drugs causes ALS like symptoms"? Is it symptoms, or the true disease? My husband went off the statin drugs for 3 weeks and did not notice any change.

My other question is how can the FDA pass these drugs without testing them for 10 years like they used to? I know the pharmacutical companies are only out for the money, but aren't lives more important?

I, too, was taking Lipitor, and began experiencing muscle cramps in my legs, feet and hands. I quit taking it and was given Vytorin. This one caused my left side (where your liver is located) to swell and become so painful that I could not sleep. I have taken two other statins that have given me various problems. I am now taking Crestor, which I have been on for one and a half weeks, and so far I am not having any problems. If I begin to have problems with this one, I don't think I will take any more drugs for cholesterol, I'll take my chances without them.

In the spring of 2005, my doctor put me on a statin-type Rx. He had explained to me that if I started feeling muscle aches or pains, I should stop taking the medication. In about three months, I started to feel weak in the legs and arms and just had a strange aching. I stopped the medication, and the weakness and aching went away. I'm lucky to have a doctor who explains drug effects to me.

I took Pravachol for many years. Pain, worse on the left than on the right, mostly in the hip and knee, became increasingly severe, and about 18 months ago I began to experience such enervation and widespread muscle and joint pain that I told my cardiologist that I would prefer death to life in this condition.

He ordered virtually every diagnostic test known to the medical profession, all of them proving to be negative; he was obviously frustrated and suggested that my complaints were perhaps normal for a man of my age (82), and he simply did not want to consider the possibility of bad side effects from prescription medicines. Only when I persisted over the course of several consultations did he agree to my stopping Pravachol.

Within two weeks, I began to feel that life was worth living again, the pain, weakness and fatigue greatly reduced. The most striking thing to me, however, is that more than a year after stopping Pravachol, I am still frequently realizing that I am now doing things that I had almost forgotten that I was ever able to do. In other words, the recovery has continued over a long period of time, as if from the damages of a severe debilitating disease.

I believe the time will come when the destructive effects of statins will be known as a public health disaster, especially for older people, and we will wonder in naive amazement how we failed for so long to recognize it.

Thank you for this opportunity to report my symptoms related to Lipitor. I asked my doctor if she would report it. Her response was "why, they know this can happen." This was not what I wanted to hear. I believe these symptoms are far more prevalent than pharma's research indicates.

I took Lipitor about one and a half years ago. After three months, I discontinued use. Why? My legs ached constantly, getting up from a seated position required me to use my arms; and my ability to walk changed radically. Stairs were a challenge also. It seemed as if I had to think about walking rather than just walk. My legs were weak. I went from an active 61 year-old to inactivity due to these symptoms.

My symptoms for the most part have cleared. This experience was extraordinarily frightening. Just recently, my doctor gave me a script for another statin! I declined!

My father passed away at 52 (heart attack), my sister at 43, my brother at 47. My mother had her heart attack while talking to me on the telephone! Exercise used to be my life, I'm not overweight, I only smoked for a short time, but my cholesterol is HIGH (family history and I'm the last one standing).

My doctor put me on Lipitor a few years ago. When I took it regularly, my cholesterol was perfect. I went off of it on my own, and my cholesterol shot right back up.

Six months ago, I thought it was my sciatic nerve. I went to the chiropractor, I'm having deep tissue massages, but the pain in my hip and lower back is killing me lately. It feels like my muscles are so tight they're going to snap. It hurts to bend or stretch. I still walk 2 miles a night, but it's an effort some nights. I used to run 5-mile races, now walking is a chore.

Am I typically deteriorating with age and all my excessive previous activity? Or is it from the Lipitor? I'm due for my blood tests next month (it's been a year) and I'm nervous that if I quit taking the Lipitor my cholesterol will be high again and my doctor will lecture me, but if I keep taking it, am I doing more harm than good? I'll be 49 next month ... I pray to wake up every day.

I read your article on the side effects that have been associated with the use of statins the day before yesteday. I've been using Lovastatin 40 mg for about 10 years after corotid artery surgery. During the last year, I suffered spells of dizziness, falling and extreme fatigue and forgetfulness.

I stopped using the Lovastatin immediately, and today I feel alive for the first time in two years. Balance is good. No dizzyness No need to sleep all day. It is miraculous. When I got up this morning, I felt as though I had awakened from a two year bad dream.

What do you suggest as a replacement drug or diet? Thank you, thank you.

P.S.: I would rather die from a stroke than go through that two years of hell again. I am 79 years old.

I am a 40-year-old female. I have taken Lipitor, Pravachol, Vytorin and now 10 mg of Zetia. I suffered extreme tiredenss, sleeping in my car or napping at my mother's during lunch, and extreme fatigue doing general tasks. Shopping for groceries became a work out. My legs were tired and ached all the time, and I had RLS.

My doctor sent me to a R. Arthirtis specialist. No mention that it could be statin-related, but switched my statin. The leg pain is almost gone, and now I take Zetia, but after reading these posts, I have taken my last dose.

I now suffer extreme confusion, lack concentration, and have trouble with my memory to the point where I worry about losing my job of 15+ years. I left work today in tears because it took me hours to complete a project that normally would have taken 15 minutes. I would rather drop dead of a heart attack than suffer for years with the side effects of the drugs.

I am a 64-year-old male who has taken Lipitor for 18 years with no apparent problems until 3 months ago. I began having back and leg cramps. Soon my arms and fingers were also affected. For probably 2 years prior to this, I had unexplained dizzy spells.

I stopped taking the drug about 4 weeks ago. Some of the pain has gone, and I am wondering If permanent damage has occurred? My doctor prescribed sea-sick meds, and would like me to try another statin. He told me I would heve to take something lifelong. NO THANKS.

This is an example of the cure being worse than the illness.

I began having stabbing pains in my feet and legs shortly after starting Zocor. I thought it was from a new job sitting at a desk for 8 hrs. Was dx as bursitis. Pains continued then dx as lumber neuritis and therapy ordered. Pains progressed to shoulder, arms, whole body along with fatigue, shakiness and anxiety when I realized it must be the Zocor and read all the blogs.

Cardiologist at Cleve Clinic said it must be coincidental and that these aren't side effects of Zocor. I know differently because I had none of these sx prior to starting Zocor. I have been off of it for 3 days and sx gradually going away. Was only on Zocor for 2 weeks; can't imagine how I would feel if I had been on it longer!

I took Lipitor for several months, and began to take pain medication (Naproxen Sodium) every morning so I could get through the day. My muscle pain only increased until I quit taking the Lipitor.

I was switched to Zocor and had cramps in my leg muscles so bad I couldn't even get out of bed in the mornings.

I tried the non-statin drug Zetia next, and developed a cough so bad my abdominal muscles hurt terribly, and I could not sleep more than a few hours.

Needless to say, I would rather die of the complications of high cholesterol than endure the pain from statin and related drugs. Of course I try to control my diet to decrease my natural tendency towards high cholesterol levels.

Last year, my husband was put on Lipitor to lower his cholesterol. Within a month, he started getting muscle pain in his arms and legs, fatigue and weakness. We thought he was coming down with the flu, but he didn't get better.

While I was reading the paper, there was a question in it regarding Lipitor and these symptoms associated with Lipitor. It was only then that we realized that the medication was causing his pain.

The doctor was very upset with him for stopping the medicine. A blood test was done and the doctor finally said he agreed that the Lipitor was causing this problem.

It is amazing how something like this could happen in such a short period of time.

I have been on Lipitor for almost a year. I am 42 with an extensive family history of heart disease.

I started having hip pain about 3 weeks ago, and it has been affecting my everyday activities. I work out 4 to 5 times a week, and have been unable to work out due to the pain.

I am going to stop taking Lipitor to see if it gets better. I cannot think of anything that could have caused this to happen, no injury at work or working out.

I am used to being active, and this has altered my life as of late. I have also had problems with my feet; I attributed it to work, but now I am rethinking that. Tried changing shoes etc., to no avail. Stopping Lipitor may just fix all of these symptoms.

susan hart.

I experienced the same muscle/joint pains, memory loss, plantar fasciitis, loss of stamina that have been reported above after taking Zocor. PLUS my vision changed, requiring a new RX for glasses. Once off the Zocor, some of the symptoms went away, but I still have leg/foot/muscle pain. Next eye exam was back to NORMAL!

I also took Zetia (since I had so much trouble with the statins, Zocor & Tricor), and much to my surprise, and my doctor's, I had an allergic reaction involving my eye/cheek; at first it was diagnosed as cellulitis, but when 500mg Cipro twice daily didn't clear it up, I (on my own) realized it was related to taking the Zetia and went back to the doctor. Sure enough, after stopping the Zetia & taking prednisone, it cleared up.

I did send info to pharmaceutical companies as well as my doctor, but have yet to see allergic reaction as a possible side effect of Zetia! Nor have I ever seen vision change related to Zocor.

My doctor upped my lovastatin from 20mg to 40mg, and within two weeks, I got out of bed and had the most awful pain in my upper thigh--I couldn't put any pressure on my right leg. I took myself off the drug after reading this site. That was two days ago, and I feel better already, thank you.

sharon

Reading all these experiences regarding statins and muscle/neuromuscular problems is disturbing. I am 55 and had been on low doses of statins (Lipitor 10 mg, then Crestor 5-10 mg) for a couple of years before I finally stopped taking them because of muscle pain in my upper back and neck, which got better when I stopped taking them and recurred when I restarted the drug.

At first I attributed the muscle pain I had to prolonged working at the computer because I had had similar neck and shoulder pain prior to taking statins. Then I began having leg cramps at night and felt a more generalized loss of strength in my legs and arms. My creatine kinase (CK) level also was mildly elevated. A relative on Vytorin told me that she actually had muscle wasting in her forearms and wrists while on that drug, which greatly subsided when she stopped it.

My neck and shoulder pain got better after several months of physical therapy, but I still have leg cramps, and my arms and wrists sometimes don't feel as strong as they used to, even considering the effects of aging.

I recognize that the statins have been very useful drugs for people who have high cholesterol levels, and they are reported to have a number of other beneficial effects, but doctors need to listen more closely to their patients when they report muscle symptoms, and think more strongly about alternative therapies for those who have continuing complaints like this.

There appears to be very little published in the medical literature about myopathy and related effects continuing long after people stop taking statins. Doctors should keep the possibility of long-term muscle injury in mind when they are placing patients on statins, and the possible association of statins and ALS or an ALS-type syndrome should be investigated thoroughly! Think how many people are exposed to these drugs; Lipitor was the number 1 selling drug in the US in 2006!

I was prescribed Lovastatin for my high cholesterol. Within less than a week I could hardly walk. My tennis was severely hampered and muscles/joints all over my body were uncomfortable. My left leg joint was the most significantly bothered. My squash was virtually ruined. It was as though it was a prelude to a hip replacement.

I reread the information sheet on the drug and looked it up on the Internet. I called the doctor and she thoughtfully said some people do have negative reactions and wrote a new prescription for Vytorin. It is a bit more expensive, but that is OK if it helps.

I recently stopped taking Lipitor after 4 years. I was on a 20 mg dose, and I had slowly slipped into a funk of depression, weight gain and memory loss. I didn't realize how bad it had gotten until I stopped taking the drug after my liver enzymes had spiked.

After 3 weeks off the drug, I feel like myself again. I have energy, I'm losing weight, and I am feeling good.

This drug can't be good!

I have been on Lovastatin for several years. I've had several symptoms for awhile, but paid little attention. Over the past year, however, pain in my ankles, knees and elbows made me investigate what might be wrong. I have also had problems with memory and speech.

I am 50, and in fairly good health aside from high cholesterol and being slightly overweight. Now, after reading the posts on this site, I'm terrified of ALS and will stop the lovastatin. Both my parents had cardiovascular disease, but my father died at 78 and was only sick for three days beforehand. My mother died at 80, after being sick for a week. I think I'd rather take my chances on the same fate than on the cholesterol meds' debilitating effects.

I am a 72-year-old male. I was placed on Zocor approximately three years ago. No side effects until one year ago. I've experienced most of the symptoms described by others: extreme muscle weakness, joint aches, etc. Additionally, I've had swelling of ankles, hands, wrists; fevers; night sweats; skin rashes; numbness of feet, toes, and fingers. Also some loss of balance. Many of the symptoms have lessened over the past few months. Question: will appropriate exercise therapy restore muscle strength?

I just read all the above on statins. My son, who is 51 years old, began taking statins five years ago under medical orders. After being on several statins, he was placed on Zocor.

In October of 2005, he developed tremors, and stuttering, which got progressively worse. Two years of visits to VA medical centers produced no answers.
In October of 2006, he started to have stooped posture, as in Parkinson's Disease, progressing to clinched hands, inabitlity to maintain fine use of hands or cutting utensils, and "jumping" during sleep. He went back to the VA with the same results.

I, too, have had several episodes of stuttering, severe tiredness and no energy. After reading your article,
which I am determined to follow through on, I will d/c
my statins and have my son see the doctor, documentation in hand. ASAP.

Thank you SO MUCH FOR ALL THE GOOD YOU DO.

I had a three heart bypass operation when I was 57 years old, and now I am 61. Having problems with legs and feet swelling, very painful cramps, sometimes muscles spasms in my arms, stomach, legs and feet, similar to a charlie horse.

After my operation I was put on Zorcor, pravachol (caused leg muscle pain), on Lipitor & Zetia today. This drugs did lower my Cholesterol to 128; my heart doctor wants it lower. My blood pressure is low because I am on Metoprolol 50 mg and baby asprin daily, I do not suffer from high blood pressure.

They removed veins from the inside of both of my legs for my bypass. Right now, I am in the process of blood and kidney testing, and my urine tested out with high levels of protein.

I have stopped taking the satins, and my cramps went away, although I still get swelling of my legs and feet, so they put me on a water pill called Triamt/HCTZ. The swelling goes down after three days, but if I keep taking this drug, I get painful leg or arm cramps.

My local doctor wants me to do more blood tests by this week because my sugar level is up, and my doctor also wants to test muscle content and blood count.

I hope this helps somebody out there; I'll try and keep you posted about my results.

I began taking statin drugs six months ago following a stroke. Since that time, I have suffered increased numbness in my feet. It has been increasingly difficult to walk because I am unable to judge the distance to the ground. As a result, I've become a real foot-dragger.

I began seeing a new PCP family practitioner. High cholesterol runs in my family, though we all tend to be of normal weight, etc. This doctor immediately put me on Lipitor, even though the number they come up with using good/bad/etc. cholesterol was not high.

After about five days of taking Lipitor, I became suicidally depressed. I do take drugs for depression, but this was like a black cloud that wouldn't go away. I spoke to my therapist and she supported my decision to discontinue taking Lipitor. The 'black cloud' or whatever was affecting my 'nervous system' (under which the Lipitor pamphlet puts 'depression') thankfully disappeared.

The sudden onset and feeling of despair and helplessness were frightening. I am sure this was caused by Lipitor as I have never experienced anything like it in my life. I was almost zombie-like in affect and just wanted to go to bed and die. I'd rather have high cholesterol.

I am treated for hypothyroid, hypertension and mild depression. Could any of the meds I take for these conditions have affected the actions of Lipitor?

As a side note: in the mid-50s, my extremely forward-thinking father forced us to swallow a tablespoonful of cod liver oil every night. Now I wish he hadn't given in to our complaining. That'll teach us.

This is my second posting on this site. It is glaringly apparent that action is needed ASAP. We have been poisoned by statins!!! Now what?

For 10 years, I have suffered multiple horrors from Zocor then Lipitor. Rheumatologists, Orthopedists, Internists, Cardiologists, why have you not listened to us?

I feared not taking it because of my mothers death from a heart attack at age 51 in 1973.

I stopped taking Lipitor 20 mg on my own four weeks ago, and have never felt better, despite permanent damage, advanced degenerative osteoarthritis.

My 52-year-old husband was on Zocor for 5 years where his doctor gradually increased the dosage from 10 to 40 mg. During that time, he experinced a number of muscle injuries (knee strain, pain on the bottom of his feet, etc.) but we never attributed it to statins. Our children began to notice him seeming disconnected, fatigued. He was taken off of his job and sent to a doctor, neurologist and neuropsychologist for testing.

He was diagnosed with Alzheimer’s/dementia and retired from his job. We communicated with a statin study group at UCSD and all of his symptoms were those that were statin-related.

As we took this information to our doctors, they would not even entertain the possibility of statins being the cause, and only wanted him to go on another statin or Aricept.

It has been very discouraging dealing with the medical community.

I took 10 mg of Lipitor each day for nearly 4 years with no adverse side effects. But last year I noticed that my memory was deteriorating. Since I make my living as a research analyst, even a slight loss of memory was troublesome. I finally asked my pharmacist if it could be a side effect of the Lipitor. Much to my surprise, and hers, mild amnesia is listed as one of the potential side effects. I never knew, and neither did she until this point, that statins cross the brain barrier. This needs to be more widely studied, and people should be warned to watch for this potential side effect.

I was surprised to read an article today in the Cape Gazette about complications from cholesterol drugs that matched my medical diagnosis of Primary Lateral Sclerosis and Pseudo Bulbar Palsy.

I have been on statins for years, but never really connected it to my condition, because I have been seen at Johns Hopkins Hospital, and the Neurologist knew I was on Lipitor for many years. I am now starting to see the connection between the drugs and my problem.

I was very healthy and active and exercised, and then started with slurred speech, muscle weakness, difficulty swallowing and loss of balance resulting in falling a few times and suffering injuries. No one, not my primary doctor, my local Neurologist or the Chief Neurologist at Hopkins, ever showed any concern about my taking Lipitor or any other previous statins.

I am very upset and want to know why we cannot trust our "caregivers" to question our meds. and let the drug companies get rich at our expense.

I am stopping Lipitor immediately and letting my physicians know I am appalled. I want to know "WHY"....

I think statins contributed to my Dad's death from heart failure. His cholesterol was about 160, his weight perfect, his diet perfect, health excellent, and he was on no medications. He'd suddenly had a small "heart attack" 3 years before he died, and was put on several cardiac meds. His cardiologist took him off most of them as he recovered.

When that doctor retired, a new one started statins for the first time, thinking they would help prevent another heart attack. (Dad had no cardiac artery blockage, but had heart muscle weakness.) Dad got weaker right away from the statins, and I called the doctor to check on bloodwork for any dangerous side effects.

The doctor said everything's fine and never acknowledged a relationship between statins and Dad's deterioration. Dad became depressed, weak, had new leg cramps, and about 6 months after starting the statins, he suddenly dropped dead at home while watching TV with Mom one evening after getting up to swallow his bedtime dose of it.

I thought his heart muscle disease was causing the rapid worsening of symptoms, but now I'm afraid it was something that was prescribed and should have been stopped.

I have suffered terribly with fibromyalgia for 15+ years. Five years ago, as my cardiologist was reviewing my medical history before bypass surgery, he noticed that I was taking Lipitor. He told me that the majority of his patients on Lipitor had some form of muscle problems like fibromyalgia. When these patients stopped Lipitor, they found that most, sometimes all, their pain went away.

After surgery recovery, I told my doctor I wanted to get off statins. He insisted I needed to stay on them and changed me to another statin. We did this over and over again for a couple more years until my pain was so disabling that I just quit taking it.

Almost immediately I started getting better, and now I have fewer problems. It also caused memory loss, which doesn't seem to improve much with time, if at all.

I feel it's very sad that the pharmaceutical companies have more control and consideration from the FDA than the public that depends on them to safeguard our health.

In reference to discontinuing statins when muscular problems occur, my wife and I are both perfect examples.

I had taken 20 mg. Lipitor for several months, and my knees became very stiff and I was unsteady on my feet. My doctor lowered the statin to 10 mg for a 6 week period, but I saw very little improvement. He then lowered it to 5 mg and the stiffness did lessen. After another 2 months, my doctor and I decided to discontinue the statin. After just a few days, my balance returned to normal and the stiffness is nonexistant.

My wife took statins for years--various brands from 40 mg to 10 mg tablets. When she finally took 40 mg. Lipitor, she developed muscle stiffness and pain in both her legs and fingers to the extent that she quit taking them on her own decision. After 24 hours, she had increasing relief in both her fingers and knees. The doctor became highly upset and immediately gave her another prescription for 5 mg Crestor. Thus far, she is able to tolerate this dosage.

I began taking Lipitor after having a mini-stroke in late 1995. Roughly three years ago (2004), I began experiencing periodic cramps in my left hand. This slowly progressed to the point where the muscles in my left hand and forearm began to atrophy. I also began having involuntary muscle spasms, starting in my left arm and now experienced ln all limbs. After a series of EMG exams over a period of roughly 18 months and after several extensive blood exams, my doctors have reached the conclusion (July 2007) that I have a slow progressing case of ALS.

have been on statins for 14 yrs. have noticed muscle loss and weakness for sometime and have in the past two weeks, experienced a small uncontrollable twitching in my left forefinger and thumb, something I have never had before. Statins?

I would like to add my experience with Lipitor. I started having atrial flutter episodes about 10 years ago. My cardiologist prescribed several drugs including Zocor, as my HDL was less than 30. Walking was suggested to help with the weight loss and cardiac exercise benefit.

After a couple of years it became evident that Zocor had no effect on HDL, so I was switched to Lipitor. And after a couple more years (HDL level still low) I became aware of pain in both legs, espeially below my knees, and my feet were sore constantly. CPK tests were negative, and the doctor said there were no signs of rhabdomyolysis. I still complained of pain in feet and legs.

The doctor added Niaspan to my regimen of drugs and finally my HDL increased above 50. With additional complaints about leg muscle aches, he discontinued the Lipitor. My triglycerides then increased. He then added Zetia to my drug regimen and that took care of my cholesterol problems.

After discontinuing the Lipitor, I felt better generally almost immediately. However, I began noticing that my left foot had developed a tendency to turn so that I walked on the side of my foot. There was cramplike pain in my shin and ankle and I started limping. Climbing stairs was painful with my left foot.

One day I realized that I could not support my weight on my left foot alone though I could do so with my right foot. I went to my PCP who discovered that the left calf was smaller than the right and diagnosed peripheral neuropathy. This was confirmed by a neurologist who called it benign atropic myopathy. Both legs had abnormal nerve conduction, but the left leg was more affected than the right.

There has been no reversal in muscle loss and the pain has decreased. I have learned to compensate for the weakness in my foot by carefully placing my whole left foot on the stair treads. If my heel hangs off the tread as sometimes occurs on steep stairs it starts to bother me.

Several family members have also experienced pain and muscle weakness while taking Lipitor. One felt arm and shoulder weakness, the others had generalized muscle pain. My wife takes this drug and has complaints about pain and tenderness in her legs. I have known others who had to discontinue Lipitor because of the way it made them feel.

There is definitely something wrong with this drug or some chemical impurity that is found in the active pharmaceutical ingredient. My atrial flutter has progressed to chronic atrial fibrillation. Is Lipitor also responsible for this transformation?

After taking statins for 18 months, I developed a severe itching rash on my scalp, back and fingers, and then subsequently severe weakness in my arms and profound fatigue--so severe I needed assistance taking a shower.

Lab tests showed deterioration of the muscles and elevated liver enzymes. Fortunately I have a wonderful family doctor who immediately suspected DERMATOMYOSITIS because of the statins & referred me to a rheumatologist who also suspected the statins.

It took me 3 months and heavy doses of prednisone to begin to recover. In the meantime all the muscles have moved out of my body and it has left me with rheumatoid arthritis in my hands for which I'll be on medication for the rest of my life.

I'm just thankful for my family doctor who recognized immediately what the problem was. I understand the the muscles closest to the torso are the first to be affected. I was fortunate that I was a walker and my legs were in excellent shape and their involvement was not a severe as the muscles in my arms. I'm now back to walking 20 miles a week, but the muscle tone in other parts of my body, including my face, may never return. This has aged me 10 years in 3 months.

I have been taking statins for over 10 years. Have had leg cramps--but lately have been having muscle pain and tremors. Am going to cut Liptor to see if there is any improvement. Cousin died this year from ALS.

After 15 yrs on statins, I have suffered from speech slurring and swallowing difficulties for 18+ months, gradually worsening. Am currently undergoing diagnosis efforts at Duke Neurology. All tests for myostenia gravis are negative to date, including plasmaphoresis. Am concerned it may be ALS.

My husband was on a statin for 12 years after a heart attack. But after having to quit teaching his Bible classes because of memory failure and severe pain in a hip/back/disk problem (doctors never could figure it out), he found the side effects Dr. D. Graveline wrote about online.

We had prayed for help, so we thanked God, and we both went off of lovastatin, even before his doctor said to. I was suffering the same pain in hip/back area, numbness down leg etc. and memory problems, but not as severe as his. His doctor acted surprised that we were going off of statins.

We both regained most of our memory, and he is teaching again. And our pain is not as intense. I was almost a cripple at night when I got up, now MUCH better. But I believe statins did it to us, because it was IN THE SAME pain area. I pray many can be helped from this terrible thing done to us.

Since then, our daughter, his sister and my sister, also, plus many friends, have had the same problems and have gone off......We tell all.

After reading the many side effects of other people taking statins, I now have the answer to many problems no doctor could explain. Even after X-rays, ultra-sound, etc.

I have the following problems:

1.Neuropathy in arms and hands....burning and numbness, which is bad always but made much worse if I rest my arms on chair arms, wood, metal, soft leather. That is where the damaged nerves are. All the same results. Medicine does not help. Also, I cannot pick up papers, etc., from the floor, because my finger tips are soft and become concave at the slightest pressure. And stay that way.

2. I have pain in my legs that over the counter meds do not help. I thought I had Peripheral Artery disease (PAD), and the doctor ordered an ultrasound with no positive or negative answer. After reading others' reports on this site, I finally have the answer to that problem.

3. I have tremors in my body that awaken me at night, along with extremely loud noise in my head. They both recede after 20-30 minutes, only to reappear the following night. of course no doctor had an answer to that. I see I'm not the only one with that problem. I have partial numbness in my feet and toes, constantly, also.

I took 40mg Pravachol for almost 11 years. After reading other reports of side effects to statins earlier this year, I reduced the dosage to 20 mg, then to 10 mg. I have not taken Pravachol or any statin for about eight months now.

But I guess I'm too late. I don't think it will ever go away entirely, if at all. I could go on and on, but of no use to anyone, other than the same things posted by other sufferers. Because the makers of statins do not list all the awful side effects, many doctors don't believe the statins are at fault.

It's been over a year since I reduced dosage and then finally stopped taking Pravachol all together, but I really have not had any lessening of the problem...except for tremors and loud head-sounds seem to be occurring less frequently--three or four times a week instead of nightly. But Neuropathy is no better. Neither is the leg pain.

I'm keeping my cholesterol at a fine level under 200, triglycerides under 100, LDL and HDL at very acceptable levels, by increasing fiber, including psyllium husks (metamucil caps) fruit, raw veggies and other natural foods, without statins of any kind. I wish I could get rid of the nerve damage, though. Jules Green

My husband was on Lipitor for several years. He began having arthritis-like pain in his knees to the point of not being able to sleep at night, and not being able to walk during the day. He quit taking it after talking to others about the symptoms.

His doctor then put him on Zetia. Within two weeks of daily treatment, he was in the hospital for acute pancreatitis; a "rare" side effect of that medication. All the hospital personnel knew of this side effect and his doctor said immediately that his pancreatitis was caused by the Zetia.

No more cholesterol lowering drugs for him! Instead we are on a strict diet, no red meat and lots of vegetables and fruit. Those drugs are not worth the risk of potentially life-threatening side effects.

My husband Richard died of ALS August 12th 2005. Prior to that, he had high cholesterol and high blood pressure. He took medications for this for a number of years, and I believe he took several statins and Celebrex.

Several years before he died, he had a heart problem and had stints. After his heart attack, he exercised three times weekly, but in the spring of 2004, he slowed down a lot and complained of muscle pain when walking or exercising.

In December 2004, he was told he had ALS and was immediately taken off the statins, but he continued to get worse. He began a medication for ALS which we were told was the only medicine available for ALS.

After taking the ALS meds for a few months, he began to complain that all food tasted awful to him. We attended an ALS group in July 2005 and heard a man say his wife did fine until she started taking the ALS meds and she quit eating.

He was taken off the ALS meds, but although he could still walk, talk, swallow and was capable of eating, he could not eat because he had no taste for food, and we were told it would take awhile for the meds to leave his system. They would not put him on a feeding tube because he could still eat and swallow.

We discovererd that 14% of people have this same reaction. He died actually of starvation, as his vital signs, heart, blood pressure, etc. were excellent a week prior to death.

I don't know what caused his ALS, but perhaps it was taking statins. He was 76 years of age at time of death. Thank you.

Thank You SO much for this site. I have only been put on cholesterol-lowering medications recently (within past three months--have tried three). I am 59 years old and genetics are against me. However, within two weeks of first medication, my hands swelled so badly you couldn't see my knuckles and I was in severe pain in hands and ankles. My doctor changed the medication, and then the cardiologist again changed the medication, and within four weeks I was again in pain and unable to walk without pain.

I took myself off the medication about a week ago, and am seeing results of less swelling and pain. However, I do still have the symptoms and am so thankful my sister referred me to this information. I believe I too will take my chances without medication.

Pain causes trouble at work as well as home, and all caused memory problems and depression. Thank you again for the information and testimonies. We all need to take control of our health and let doctors know we will not be victimized by these 'miracle' drugs.

My husband began taking Lipitor three years ago for one year, and began having weakness and pain in his legs. He was then switched to Tricor, then Zocor, and the last one he tried was Zetia, which he took for about three months then decided on his own to quit.

Each one of these statin drugs caused pain in the legs, muscle weakness, and some difficulty in articulating words. Early this year, he progressively worsened, begining with slurred speech, difficulty walking, weakness to his arm and hand, and some muscle faciulations.

He is in the process of being worked up for PLS/ALS, which has not been definitely confirmed. He has been in the hospital for almost two months now going through rehab, and I cannot help but believe that this was all brought on by the use of statin drugs, which showed his LFT's being elevated with each one of these drugs, but the doctors did not think that his problems were because of the statins he was taking.

Today he is no longer on statins, but still struggling with trying to regain some of his strength, speech and swallowing back as he goes through rehab.

My Mother has ALS. We noticed problems when she started taking Pravachol. We would read articles on the side effects of these drugs. She had symptoms, would lower the mg amount but would not stop due to the doctor. He also added another, Zetia. After the doctors confirmed ALS, they stopped all statin meds. Too late. The damage had been done.

I have been taking Crestor for about two years for slightly elevated cholesterol. I have type 2 diabetes. I am 54, but I feel like I am 80. I am getting weaker, it seems every day. Legs and back are now a real problem. I can not get up after sitting and my hips feel like they need to be replaced. I am also starting to forget things I am supposed to take care of at work. I am going to quit taking the 10 mg daily dose and find a new doctor. I will update this as soon as am off of the Crestor for a couple of weeks....Thanks to everyone for their input.

I'm a 57 year old female who has had type 1 diabetes for nearly 45 years.

Unfortunately diabetics tend to run very high cholesterol levels. About 5 or 6 years ago my primary doctor decided to put me on a statin drug to help with my climbing cholesterol levels. I was running around 220 at the time. She put me on generic Mevacor (Lovastatin) at 40 MG daily. I was on that dose for 4-5 years with a number of "arthritis" pain problems to follow (they were never sure which kind). They told me: inflammatory, rheumatoid, fibromyalgia, most recently polymyalgia rheumatica.

In early January my dosage of statin was increased from 40 to 80 MG daily. After about 5+ weeks I found that my memory was becoming a complete mess. I couldn't remember anything. I also had a short experience of total amnesia. Fortunately it only lasted for a short time.

This really scared me. I looked on the internet the next day and found Dr Graveline's info that statin drugs could cause this problem. I also noted the muscle pain problems listed.

I now am wondering if the statin drug may have caused this as well--or at least may have aggravated an already potential problem.

I just recently was let go from a new job that I had recently acquired. I was there for just under 90 days. They said that my memory problems seemed to be causing me too many problems & they had to let me go.

I am now on Zetia (not a statin drug) My last cholesteral test showed 263. I knew it would be high since I had been off the statin for over 4 months. I told my doctor I would NOT take a statin drug again. I also told her about my memory problems.

I was scheduled for an MRI where they found
"mild diffuse brain atrophy" compared to an MRI that was done just 2 years previous.

That sure didn't make me feel "warm & fuzzy". Really kind of "freaks me out".

I am scheduled for a neuropsychological evaluation next week.

I'm really curious as to what this may reveal.

I'm scared as to what this may mean for my ability to ever hold a job multi-tasking as most jobs require.

I am an active male, 53 years old, who works out regularly, runs and is in generally good physical shape. I have back and knee pain mostly from years as a paratrooper in the Army.

I was taking Zocor for my high cholesterol for about 6 months when I began to notice that the whole right side of my body was weaker than the left side. The weakness was in my right leg, the right side of my abdominal (core) and my entire right arm and shoulder. I ran with a limp. When I lifted weights I had to put different weights for different sides of my body.

I actually thought I was having some kind of symptoms of a stroke. I stopped taking Zocor at the advice of my doctor after I went to him thinking I had had a stroke, and after he found some kind of muscle enzyme in a blood test.

I have been off Zocor since January 2007, and I am still experiencing weakness throughout my right side some 9 months later.

Have been on lipitor for years. Up to 40 mg now. Despite increases, cholesterol goes up. Have complained of weakening of muscles and unsteadiness walking. Tests find nothing. Have not been checked for ALS. Dr says old age, arthritus, back problems etc. Blood pressure and cholesterol medications have taken sexual enjoyment completely away from me. Can barely throw a ball, climb stairs, run. Can run farm machinery or construction equipment all day. Sleepy often during day but not so good at night. Energy and ambition went out the window

I took Lipitor 10 mg for borderline high cholesterol (around 200) about 5 years ago for about three years. Had terrible calf pain that caused me to go to the ER and get an ultrasound of my legs. Nothing was found. Then my doctor put me on amytriptiline, but I couldn't take it. Most problems were late in the day or lying down to sleep, like RLS.

I never put it together until I saw something on the internet and just stopped taking the Lipitor. My legs felt better almost immediately after suffering for 3 years, though there seems to be some residual pain behind my knees. Anyway, I freaked out again due to family heart history and started taking Zetia. OK for about 1 year and now the same calf pain, especially if I have a glass of wine or a beer. So long Zetia!

I wonder if the advent of RLS doesn't coincide with the release of the statins and cholesterol lowering drugs?

I took a well-known statin drug in 2005. Within a few weeks, I was having severe muscle pain in my neck. My doctor immediately took me off of Lipitor. Within a short period of time, I began to have problems with vertigo, followed by cognitive problems. A senior citizen attending college, I had to drop out of school for a few months, as I could not complete the exams. The mental symptoms did not abate for nearly six months. It took until the end of 2005 for me to recover completely and get back into school, and complete exams I had deferred. I underwent many brain scans, etc., to determine if I had had a stroke. I had not.

I have naturally high cholesterol, unrelated to diet. I no longer take statins, but do take a cholesterol-lowering drug, periodically, along with fish oil, etc.

I just read your piece regarding a doctor refusing to accept statin symptoms. Last year my cardiologist put me on 40 mg of Zocor. Two and a half weeks later I had severe pain and impairment in my trunk muscles and dark red urine. His nurse, and then he, dismissed the seriousness. I was lucky--my primary care physician, after about two minutes, recognized that I had rabdomyolisis, put me in an ambulance and sent me to the hospital where I spent a week flat on my back, since I couldn't sit up, with a constant saline IV to flush my system, the only remedy. My CPKs were in excess of 92,000!

You suggest the other correspondent "might need to see another doctor." That's an understatement. I fired the cardiologist and demanded the HMO provide me with their best. I would have chewed out the first doctor but he didn't even show up at the hospital. My PCP did, however, on both counts.

A doctor of my acquaintance whose entire practice is hospital-centered said that rabdo and other statin-related conditions are vastly underreported.

I was taking Lipitor and started having shoulder pain. Even had my arm immobilized in a sling. Then my hips started hurting and other parts of my body. In a few months, my feet hurt very badly, and felt brittle, like I was going to break every bone in them by just standing.

My doctor, a nationally known specialist, was sure I was developing Rheumatoid Arthritis and I did testing but it was negative. He was going to send me to an arthritis specialist. When I suggested several times that it may be due to Lipitor (and later we switched to Vytorin) he treated me like I was an idiot.

He is a smart open-minded doctor, but I think that the drug companies completely brainwash these guys into thinking that these drugs are safe and these side effects are very rare. He had been my doctor for years, and I considered him a friend.

After going back to my regular internist and getting off the Lipitor, my symptoms disappeared completely. The drug companies have these competent doctors believing the symptoms are infinitesimally small. I do have several friends taking Lipitor with slight muscle pain, and some with none. But it does severely affect some of us.

My brother has been in the hospital, near death, for a month due to side effects of Lipitor. During the month he was taking the medication he grew continually weaker until, finally, he could not get out of bed. We carried him to the car, took him to the hospital, where he was diagnosed with rhabdomyolysis that was caused by the Lipitor. Since that time, he has been fighting for his life, and though he seems to now be on the mend, he still cannot sit or stand without help and will require lengthy physical rehabilitation.

I was on Pravachol for 8 years, then Lipitor 40 mg for 3 years, and this spring began to develop muscle pains in my upper thighs and cramping and weakness, to the point of falling on uneven pavement. I went from walking 7 miles/day at a rapid pace in March to having to hold on to the railing on stairs and walking very slowly and painfully. My CPK was up to 480 in May.

I went off the statins (except Zetia) 3 months ago and the CPK is normal, but there is no improvement and in fact deterioration at a rapid rate. I decided to dump the Zetia a week ago. My cholesterol is way up again (I had a heart attack 15 years ago and 2 angioplasties). I'm due to see my long-time cardiologist in the DC area this week (my local cardiologist in my small town gave no useful advice or input), but don't feel optimistic that he will be helpful either after reading what everyone else is going through here.

Nobody seems knowledgeable about these side effects. I don't want to have this get any worse, so if he prescribes more statins, I don't know what to do. I was a vigorous 73 year old but now feel very uncertain about the future.

My cardiologist put me on Lipitor 20 mg, and I remained on it for 2 years. I developed a deep soreness in my right elbow that would not go away. I went to PT, did exercises, took anti-inflammatories, but no relief.

I decided to discontinue Lipitor, and at the same time began taking 200 mg per day of COQ10, 100 in the morning and 100 in the evening. Within 2 weeks, my elbow pain diminished, and within 8 weeks disappeared. I began to feel stronger and more flexible.

My cardiologist was totally unaware of blood testing for COQ10. My initial value was .7 and after 8 weeks of the regimen my value was 2.6 which is optimal level. I now manage my cholesterol with Resq1250, diet, exercise, fruits, nuts and the right fats. I am focused on CRP and Lp(a) control.

So far, so good! If your doctor is not on your team GET A NEW ONE! Do your homework and be prepared.

My mother-in-law is 86 years old and has been in reasonably good health. Several months ago, she started complaining about increased pain, and she seemed very weak and confused. Within a month, she could not walk and was forced to leave her home and move in with her granddaughter.

I researched her medications and found a drug interaction between her Simvastatin 40 mg and her Verapamil. We brought it to the attention of her doctor who said, "There is no interaction." On our own, we stopped the Simvastatin and within 4 weeks, she had improved dramatically. Now two months later, she is walking without a walker, and feels pretty good.

She went back to the doctor the other day and her cholesterol was high so he ordered Vytorin 10/80. What is it with these doctors??? If she could not tolerate 40 mg of Simvastatin what makes him think she can take 80 mg??

I mailed her doctor a copy of a paper in Clinical Pharmacology and Therapeutics on this interaction and am waiting for his reply. I have absolutely no intention of filling that Vytorin Rx. One question I have is this--at 86 years old, is it that critical to aggressively treat elevated cholesterol? She has no history of heart disease, although she does have a murmur.

I too experienced severe muscle problems while taking statins. I tried several different ones and different combinations, but nothing helped.

I stopped taking them and found extended time release niacin. I went on a 500 mg dose of Endur-acin three times a day. After one month my LDL was down to 64 and my HDL was 46. My triglycerides were at 77. I have experienced no side affects from the Endur-acin. And, my muscles have recovered and I no longer suffer from pain in them.

There is also a prescription version of extended release niacin called NIASPAN for those who need a prescription version. While using Endur-acin I have experienced no flushing that occurs when taking plain (immediate release) niacin.

For more information on the benefits of extended release niacin, go to www.endur.com, or check out Dr. William B. Parsons, Jr.'s book on this subject at www.cholesterolnodiet.com.

For the record, I have no connection to any source I have referenced. One word of caution is in order, no one should go on a niacin program without consulting with a doctor. If your doctor is unfamiliar with niacin, or skeptical of it, you should find another doctor.

On all statins, I had complete insomnia or vivid dreams that would keep me awake. After 4 days I couldn't stay awake at my desk or in the car. The doctor said it couldn't be the statins and after a few months I would get used to the side effects. Didn't have muscles aches, but my legs felt like lead, very heavy. Apparently I cannot be on any form of statin. The doctor has indicated this is a mistake on my part.

Reading all of these posts is truly frightening. I started taking Lipitor about 5 years ago. Over the years, my life has changed so much because of extreme fatigue, and pain--sometimes quite severe--in my hips and knees, as well as weakness in my legs, fuzzy memory and inability to focus. I was always pretty intelligent and quick to pick up new things, but I have spent the past few years feeling as though I've lost about 40 IQ points. Every physical and mental exertion is difficult, and I'm always too tired to do things I need to do, much less things that I used to enjoy. I'm 55 and feel as though I'm just killing time until I die. Even miserable as I am, my situation seems relatively minor compared to many I've read here.

At my regular checkup a couple of days ago, I asked my doctor if I could try going off the Lipitor for a while and see if it makes a difference, and he told me it would be fine to stop taking it for two weeks or so. I'm really hoping there is an improvement so I can get back to living my life.

So many people have had such awful effects from statins that it's hard to believe they're still being touted as being so safe. Worse yet is that so many doctors apparently won't even consider that their patients may be right in connecting their suffering to the statins they are taking. I'm lucky to have a doctor who has enough respect for me to help me find out if there is a connection.

Thank you, Graedons, for the information you provide, and for giving people a chance to post their experiences here. I hope it will get the attention of someone who can do something about it.

I have been taking statins for almost 10 years. I have developed muscle weakness and extreme muscle pain in my lower legs. I feel like statins have ruined my life. I have no stamina, and even after being taken off statins, the problem continues. The bottoms of my feet are very tender much of the time.

If I would have known what these statins (Baycol and Lipitor and even Red Yeast Rice) would do to me, I would never have taken them. I would have opted for a more healthful way, like taking Niacin, ground flax seed, lignan oil...

Steve Park

I AM A 50 YEAR OLD FEMALE WHO HAS BEEN ON STATIN DRUGS FOR HIGH CHOLESTEROL AND TRIGLYCERDES SINCE 1987. APPROXIMATELY 5 YEARS AGO, MY HEALTH BEGAN TO DETERIORATE RAPIDLY.

I DEVELOPED HIGH BLOOD PRESSURE WHICH MY DR. ATTRIBUTED TO MY BEING OVERWEIGHT. HOWEVER, I HAVE BEEN THE SAME WEIGHT BASICALLY SINCE THE BIRTH OF MY LAST CHILD IN 1985. I HAVE HAD PROBLEMS WITH MUSCLE PAIN AND HAVE BEEN DIAGNOSED (PERHAPS WRONGLY) WITH FIBROMYALGIA. I ALSO HAVE BEEN DIAGNOSED WITH COPD IN SPITE OF THE FACT THAT I HAVE NEVER SMOKED A CIGARETTE OR ANYTHING ELSE IN MY LIFE. I HAVE PAIN IN MY FEET, LEGS, ARMS, BACK, SHOULDERS--BASICALLY I HURT ALL OVER.

I REALLY WOULD LIKE TO BE ABLE TO GET OFF ALL THE DRUGS I AM ON. I AM ON RX FOR BLOOD PRESSURE, CHOLESTEROL, COPD, FIBROMYALGIA, ETC ETC ETC, I THINK THE DRUGS ARE KILLING ME. ANY SUGGESTIONS?

I experienced overall muscular pain while taking Zetia and then Vytorin. I discontinued both immediately and notified my cardiologist each time. I am now successfully taking 40 mg of Crestor and 1000 mg of Niaspan daily, which has reduced my cholesterol to less than 140. I experienced a heart attack in May 2005, apparently caused by plaque dislodging from the LAD artery, which resulted in 2 stents being implanted, so I understand the importance of keeping my cholesterol under control.

Joe and Teresa, you are doing a great public service here exposing the downside of these drugs. The FDA needs to listen and put more warnings and dosing recommendations on these drugs. Doctors keep saying that these problems are rare. Nonsense. I personally know 5 people who had side effects ranging from mild to debilitating. The drug companies advertise these drugs like candy and scare everyone into believing that they will drop dead tomorrow without them. Particularly in the elderly, that is just bunk. We consumer/patients need to stand up to the pharmaceutical lobby and our doctors and say, "We're not going to take them anymore!"

My dad had heart surgery 10 years ago. Since then he's been on diff/ types of cholesterol medications. About 2 years ago his doctor increased his dosage of Lipitor from 40 mg to 80 mg. Last year he started to stumble a lot and had slurred speech. His condition has gradually worsened. He can't keep his balance and has frequent falls. My parents have had to get rails installed on outside steps so that he can balance himself. My dad struggles to keep his independence and will not give up trying to maintain the quality of life he had before this problem occured. He's been through every test you can imagine and all tests have come back negative.

When suggesting to the doctors that his condition was caused by the Lipitor, the doctors quickly dismissed that possibility. When these symptoms first started his primary care doctor immediately took him off of the Lipitor after my parents suggested that it could be causing the problem but his doctor refuses to admit that it's likely that the Lipitor did cause the problem. So my question is this. If doctors don't think there's a link between these ALS-like symptoms and the Lipitor, then why are they so quick to take patients off of the medication once these problems are reported? I think the doctors know there is a link although it hasn't been medically proven YET. They're all probably afraid of being sued so the easy thing to do is to not acknowledge there's a connection, take the patients off of Lipitor and put them on something else. Meanwhile, the patient is left to feel hopeless about ever returning to normal health.

I wish that there were some way to hold the medical community accountable for not telling patients what the possible side effects are to taking this medication. It just doesn't seem ethical to me to prescribe medication to a patient that can cause this type of permanent damage. Patients rely on doctors to improve their quality of life w/ medical treatment. All of the stories I've read can't be "isolated cases". I'm convinced that Lipitor does cause ALS-like symptoms when taking it in high doses (80 mg).

I'm writing not only to share my dad's unfortunate experience, but to also see what can be done to hold the manufacturer of Lipitor and the medical community accountable for not being truthful about the possible life-changing side effects. It's appalling to think that this can continue to go on w/o the FDA or some organization taking these cases seriously and doing something about it. I'm praying that my dad's condition will improve now that he's been off of Lipitor for a year. He seems to be getting worse but w/ God all things are possible. I will continue to pray for him and all patients who have been negatively affected by taking this dangerous medication.
God bless you all. Please email me w/ any suggestions of who I can refer my dad to for medical advice (jholleyj@yahoo.com).

I was diagnosed with Familial Hypercholesterolimia (FH) back in 2002 (at the age of 30) on the basis of a single blood test (Total Cholesterol then 11.01). I have since been genetically screened and no known mutation was found which might indicate it's not really FH?

Anyway, historically though my mum died of a heart attack in her 40's and so did her brother. But these might have been due to sedentary lifestyles.

My brother's on Statins as apparently he's got FH too. My sister appears to have escaped.

So anyway my GP put me on Statins straightaway. (10 mg Atorvastatin).

This only helped partially so this was supplemented with 10 mg of Ezetimibe (Ezetrol).

Now, knowing my family history, long before I was even diagnosed with FH, I'd vowed not to go the same way as my mum, so I'd taken up running and found I really enjoyed it. I used to love going for a run as my times were constantly improving (e.g. a 10 second improvement for a 4.5 mile run within a week) and I was loving my constantly improving fitness levels. I'd go to bed at 12-1 am, be up at or before 6 am and after a nice long run, would have long hectic days in the office, come home, have dinner and be doing diy round the house til around 10 pm and the word tired never even came into my mind. I was like any other normal 30 yr old enjoying life. I certainly didn't feel stressed.

As soon as I started on the medication, however, my running times went straight down the pan. Over my regular 4.5 mile route I was nearly 4 minutes slower.

I mentioned it to my consultant at Harefield and he suggested trying a different Statin so I was put on Rosuvostatin instead.

Still the same problem and he said I was just getting old!!! Strange how my running friends (some of whom are even older) kept getting faster. :-(

I carried on my running even though I didn't enjoy it as much anymore. My legs never quite felt right--almost as if something was zapping some of my energy and some of my strength was actually being wasted trying to simply make my legs move than carry me even faster.

He convinced me that this "minor" inconvenience was worth putting up with rather than contemplating the alternative (a heart attack or stroke at a young age). I went along with his advice.

Then earlier this year (Jan 2007) a different consultant decided that he wanted to "treat" my condition a little more aggresively and increased my Statin dosage to 20 mg on alternate days (10 mg in between), effectively an avg of 15 mg a day as they apparently don't make a 5 or 15 mg tablet.

As I'd been on 10 mg for nearly 5 years I didn't think much more harm would come from going up to 15 mg.

And to be honest I didn't detect much of a change.
I came down with a persistent cough that wouldn't go away (I normally don't get coughs/colds at all).

The worst bit was not the cough (which sounded like TB!) but the extreme tiredness. I didn't feel like doing anything. I eneded up taking three weeks off work. I even went for TB tests.

I dragged myself back to work and struggled on for a few weeks.

Then in May the consultant decided that my total cholesterol had come down from 5.6 to 5.3 with 15 mg but he wanted to get it below 5. So he told me to take 20 mg of Rosuvastatin a day.

My cough was still there and the tiredness just kept getting worse. I still hadn't made any connection between the increased Statin and my tiredness. I ended up going off sick work again as I just didn't have enough energy to do anything. My body was starting to feel lifeless. My GP thought I was asthmatic (I'd never had asthma in my life) and put me on a powder inhaler to be taken for 2 weeks before going
back to see her.

I took it for 3 days and it didn't seem to be helping the cough or the tiredness. Deep down I knew I wasn't asthmatic and stopped taking the pump. And then I happened to be speaking to a friend who mentioned she'd been off with a persistent cough and a book she'd been reading (you are what you eat) had suggested liver sluggishness can cause tiredness and persistent coughs and she'd taken some liver detox supplements (Milk Thistle, Zinc, Magnesium etc) and her cough of the last 6 weeks disappeared within 3 days.

As soon as she mentioned that, it twigged. My blood cholesterol tests have always included liver function tests as well as muscle function tests as it is known that Statins do have an undesirable effect on these.
I also rememebered my Osteopath (who I had seen in the past for a back problem) had mentioned my liver was swollen and had recommended Milk Thistle to detox it.

Putting two and two togther and coming to the realisation that my extreme tiredness could be linked to the increased Statin dosage, I decided to stop taking it. After all my GP was fed up with seeing me and had said that she thought my tiredness was all in my head as she said there wasn't physically anything wrong with me.

Especially when I'd told her I'd not taken the asthma pump for two weeks.

Lo and behold, after taking my last Statin on a Fri night, not taking any on Sat night, my energy levels started to return on the Sunday. I could see the cloud of darkness lifting. I went back to my GP on the Mon to tell her I'd taken myself off the Statins and that I was starting to feel better already.

She said she couldn't leave me on nothing (for the elevated Cholesterol) so she's now left me on the 10 mg of Ezetimibe and put me on 4 satchets daily of the totally horrible Cholestyramine (a bile acid sequestrant). I've been on this for nearly two months now and am going back to see the consultant early October to see how my Cholesterol levels are faring now.

The cholestyramine gave me some diarrhea to start with which has diminshed over time, but still means I have to go twice a day now as a minimum. I can also look forward to diminshed levels of fat soluble vitamins like A, D & K over time while on cholestyramine.

The running is getting better slowly. It appears it will take a long time to regain my previous speed if I eventually do.

I'm hoping the cholestyramine will keep the consultant happy with my blood cholesterol levels. Ideally I don't want to go back to even 10 mg of Statin. After what I've been through, I'd rather live a more active life to 50 than a tired miserable existence to 80.

Thank God above that I found this site tonight. Right now, I am not only in pain throughout most of my body, but am trying to determine whether my fear or my anger is uppermost in my emotions.

Some months ago, while on Lipitor, I experienced the same nightmare that has control over me right now. I stopped the Lipitor on my own and lost all these symptoms. Then, it was insisted that I switch to Crestor. Everything ran smoothly until about a week ago, when I started this process all over again... only to realize tonight I am right back where I was with Lipitor.

The fear is from the incredible pain that my body is suffering: shoulders, legs, arms, joints and a headache that feels like a prelude to death. The anger is at myself for not recognizing this pattern from before with the onset of the symptoms, and for not stopping with the Crestor. Needless to say, I did not take the pill for tonight. This wrecked body will be sitting with my doctor tomorrow with a list of alternatives that I have copied from the people sharing this site, and I thank you for your help from the bottom of my heart.

Both of the episodes started weeks after each drug, and took about a week to wipe me out both times. Several hints were there, but because I was functioning, I overlooked them. Two weeks ago, I asked my doctor why one of my knees has suddenly gotten larger than the other... she was as bewildered as I. But, she did ask me if I needed something for the arthritis that had set in. What arthritis? Now, I can assure you that I feel the pain... in my knee... all my fingers, etc. I have for some time felt like I was losing my abilities in writing, spelling, even remembering simple words and names. Sometimes, I cannot remember if I have even seen a certain movie, and only realize that I have seen it some way through it. I am swollen--hands, one knee and my rings do not fit. My muscles have been literally disappearing... and for some unknown reason, I have some lumps under my skin in different areas of my body that are hard.

Again, thank you God, my mammogram was clear. For two weeks now, I have had instances of my legs going right out from under me. This morning, I felt tired after being up about an hour... decided to take a small nap... and woke up at 2:30 in the afternoon. My next nap was at 6:00 for two hours. It hurts just walking through the house. I love to walk my dogs, but now it is painful, and I have to wrap the leash around my wrist to keep a tight hold on them. Both calf muscles have constant cramping in them. There are actual scratches on me, from trying to relieve the itching. Noise can be almost unbearable, and the headaches are so severe that nothing touches them. Add to this that I have had the "flu" for a week now, complete with fevers, hot burning sensations, night and day sweats and muscle aches. There have been at least five episodes this week of bursting out in tears. I have felt that I was about to die... even contacted some relatives and told my husband that I was going downhill fast and felt it was about all over. Then, I started up from a seated position tonight and remember having all of this from before.

My only relief is that when I took MYSELF off of the Lipitor, I did return to normal. I will ask the church to pray for me on Sunday and hope that I am as fortunate this time. The people who opened this site have my e-mail address. I will be glad to participate in any way to help all of you here, for others blindly going through this, for myself, to educate doctors, to alert the proper authorities through letters, petitions or however it is deemed necessary to put an end to this. Let us join together and make a difference.

Very Sincerely,
Jane Gray Jones
Hampstead, NC

My wife & I both, had problems with statins. I had leg cramps for 6 months--after two pills--whereas my wife was in a wheelchair after 5 years on a statin. Neither of us have any problem now, & our cholesterol has dropped from 280 to 180, with only use of "Take Control" soy butter.

I am 71 years old. Six years ago , I was told by my Primary Dr. that my cholesterol was too high and was put on Lipitor 20mg along with Gemfibrozil 600mg. Four years later, I had a problem with my heart and had 2 stents placed.

At that time, I had a cardiologist who said I had to increase my Lipitor to 40mg. After a period of time he was not satisfied, and increased the Lipitor to 80mg. I now was experiencing severe leg pain, and went off the medication on my own. The pain subsided.

When I went to my cardiologist for my next appointment I told him what had happened and he kind of fluffed it off. He said I want you to try Crestor 20mg. Reluctantly, I went on the medication and before long,I had even more severe pain. I went off Crestor, but the pain did not go away.

One morning 3 months ago, when I tried to get out of bed I could hardly walk. I went to my internist who had an MRI done on my spine which indicated a bulging disc. I began therapy for the disc, but nothing was changing, except I began to notice slurring in my speech. Finally, I was seen by a neurologist who had a CT scan and MRI taken which proved I did not have a mild stroke as he thought. One week ago, I had a EMG test done, and was told I now have ALS. I was stunned! I have an appointment In Boston with the premiere Neurologist in the nation to confirm this diagnosis. I know this all started with the Lipitor and continued with the other statin drugs I have taken. I can't believe that these drugs have not been properly investigated.

I have been taking Lovastatin for the past couple of years through the Veteran's Admin. I have experienced increasing pain in my knees and feet and a rapid decline in leg strength and stamina. After reading several of your articles in our local paper as well as other articles about the dangers of statins, I decided to seek other alternatives to the Lovastatin.

Just last week I began taking two 1200 mg gel caps of fish oil per day and I stopped taking Lovastatin. Within four days the strength in my legs is coming back and the pain in my knees has subsided to the point that I do not have to take any pain medications. Also the foot pains have stopped. Finally, I am able to walk more without simply "giving out" and having to sit down. What is it going to take to get the industry and the doctors to wake up to the dangers of these drugs?!

Thanks for the service you are performing for us folks out here who would not otherwise know about the things you publish. God bless you.

William Sparling
Sequim, WA

I took Lipitor from April 2005 to April 2007. I just couldn't stand all of the side effects. Back pain so bad I had to have help getting in and out of bed. My body and legs felt like there was lead in them. Then the trembling started from my head to the soles of my feet. It feels lke all the nerves are moving. All I had was high cholesterol, now I am in very bad shape.

MY MOTHER LUCILLE WAS ON LIPITOR APPROXIMATELY 1 AND 1/2 YEARS, AND AT AGE 51 STARTED GETTING SYMPTOMS OF MUSCLE WEAKNESS AND SPEACH PROBLEMS. THEY DIAGNOSED HER WITH PLS, PRIMARY LATERAL SCERLOSIS, A SLOWER PROGRESSING FORM OF ALS. SHE WAS STILL TAKING LIPITOR AT THIS POINT. THE DISEASE STARTED PROGRESSING VERY RAPIDLY, EVENTUALLY LEAVING MY MOTHER CONFINED TO A WHEELCHAIR, BED RIDDEN, NOT ABLE TO SPEAK AND EAT AND EVENTUALLY PASSING LAST JULY AT AGE 57 FROM ALS. I TRULY BELIEVE THIS WAS CAUSED BY LIPITOR. IT IS THE ONLY DRUG MY MOTHER WAS EVER ON. SHE WAS A VERY VIBRANT WOMAN UNTIL SHE STARTED THE LIPITOR.

I started taking Zocor 4 years ago, and the problem started a few months later. I had a hard time getting in a car, and was not able to walk more than half a block. Three years ago, I stopped taking Zocor and took COQ10.

My doctor said there was no way that Zocor was the problem. I am still not able to walk without a cane, and I think it is geting worse. I know that the Zocor did it.

My 43 year old brother was diagnosed with ALS and dementia one year ago. He had been taking a statin drug (Zocor) for awhile. My father is 71 and was recently diagnosed with ALS. He has been taking Lipitor for a few years now. Since familial ALS is extremely rare, I'm beginning to wonder if the statin drugs had something to do with triggering ALS.

I am a 48-year-old female who was mostly in good health. I do not smoke, drink, and was walking/jogging regularly 2 miles with a friend usually 3 times a week. Last November, I suffered a rather severe heart attack while jogging. I was rushed to the hospital and given angioplasty with two stents.

There was no reasoning why I suffered a heart attack; and the cardiologists were baffled. My blood pressure was low, my cholesterol mildly elevated but not overly concerning. Still, I was put on a regimen of meds including blood pressure medication, Coreg, as well as Lipitor.

I took the drugs religiously for about 6 months. I lost energy, and started having muscle pain and weakness. I gave up walking/jogging (though it was highly recommended by the cardiologist) because it just hurt so bad to use my joints and muscles. I started to experience memory loss, but was told it must just be an age or stress issue. I went grocery shopping one day, and upon arriving back to my car, I realized that I could not remember where I lived. After about 30 minutes sitting in the car in fright, I finally got a general idea of my address and was able to drive home.

I started researching all the medications that I was taking, and I did come across many internet articles about statin drugs causing memory loss. I stopped taking the Lipitor as well as the blood pressure medication (my normal blood pressure is 98/73 without medication). Within 2 weeks I started having more energy and my memory began to return. The muscle and joint pain also diminished, and I began to walk again. I was feeling more like myself and was so relieved that simply stopping those two meds had made such an improvement.

My most recent LDL cholesterol was 105, and the doctor thought that was too high for a person who had suffered a heart attack less than a year ago, so he put me on Zocor (I refused to go back on Lipitor). Now I am beginning to experience joint pain and muscle burning sensations. I am so worried that the next step will be losing my memory again, I don't know what to do. I would almost rather risk another heart attack than lose my memory or motor skills again. Please add my story to the petition in hopes that something can be done.

My husband was taken off Lipitor after having severe muscle pain, memory problems, and changes in his cognitive thinking. His physician did not believe his symptoms were related to the Lipitor but my husband stopped using it.

There has been improvement in the muscle pain, but there are lingering problems with the memory and cognition problems.

I would have to check my records, but I believe I began taking Lipitor over 8 years ago for high cholesterol. I also have rheumatoid arthritis. I assumed the severe pain and sleepless nights, increased difficulty walking or standing up, muscle weakness, lack of strength and tiredness was all due to the RA. Then my sister was also having problems, and since she doesn't have RA, she contacted her doctor who took her off Lipitor. She, like me, cannot take any of the statin drugs. My doctor tried me on several, and they all had the same result. I also had been complaining about pain and sensitivity in my feet and for lack of any other explanation, I was diagnosed with plantar fasciitis. I have orthotics and was told to use ice packs. Can't walk around with ice packs on my feet. Finally after my sister went through the electrical diagnostic tests, and was diagnosed with peripheral neuropathy, I spoke to my doctor, about having the same problems and symptoms and was tested and also have peripheral neuropathy. I was nearly suicidal last year I was so depressed because the medication I was prescribed was not helping and I had very limited mobility. I also was considering microsurgery similar to carpal tunnel surgery for my feet, so I could walk more and have a more normal life. It has been a nightmare.

I have been on Vytorin 10/20 for a little over a year now. Have stopped it twice in that time period due to muscle pangs and twinges that were not explainable, but doctors said it was not likely the Vytorin. Ended up in the hospital two weeks ago with pain in chest area that I thought was my heart, but ended up being gastric problems. Also my stool had changed color during this time that worried me (very pale in color). Heart was fine and I have had all the gastric tests done--no problems.

I stopped the Vytorin and within 5 days a lot of the gastric distress has subsided somewhat, and stool color returned to normal. Still do not feel quite right but each day is a little better. Feel like I am having withdrawals. Will try to find some other way to lower cholesterol. If anyone reading this has had any similar occurrences, please let me know so I don't think I am totally crazy!

I began taking Lipitor in April 2000 due to a blocked artery. I was 50 years old.

I started having memory loss after 4 years and took myself off. I got better, but in 2005 my cholesterol was up and the Dr. put me back on, but changed it to Crestor. In 8 months I developed weakness in my legs and couldn't get up out of a chair, go up/down the stairs etc.

I went off the Crestor on my own in Jan. 2007. I started exercising more, I had already been using the gym 3-4 times a week. I got stronger, in that I could get up out of a chair without using the chair arms. However, I began to see a loss of thigh muscle and after being diagnosed with osteoporosis in May.

I mentioned my leg problems to the Rhumatologist. He was concerned and after having electro muscle probes and a muscle biopsy, I have been diagnosed with the rare Inclusion Body Myositis. There is really no treatment for this debilitating desease, but I am trying home injections of methotrexate. I've been taking the shots for a month. I'm not sure if I'm any stronger yet. I will continue for a few months and hopefully I will improve. If not, I will stop the shots and there will be nothing else to take.

There is very little research on this desease since it is so rare. However, I did find an abstract in the ScienceDirect written in Feb. '07 that research is linking statins to necrotizing myopathies suggesting statins may initiate an immune-mediated myopathy that may respond to immunosuppressive therapy. So, I'm somewhat hopeful.

With us baby boomers using these statins to supposedly improve our lives, there may begin to be more cases of these muscle deseases. I personally think the statins, especially the Crestor, initiated this desease. I will live with this the rest of my life and unfortunately the prognosis is in 10-15 years I will be unable to walk without support.

I am a 58 year old male. I was prescribed Vytorin for cholesterol and triglyceride reduction. I took it for 3 months, and the doctor refused to admit that my joint pain was from this drug. Then I got a severe dizzy spell--this vertigo-like symptom along with blurry vision, pressure in the head, etc led to all sorts of neurological testing: MRI's EEG's Vep's etc. It took over six months for the bad dizzy attacks and vision problems to diminish. Also, my terrible knee problems are finally subsiding now but I still am not 100%.

I am convinced that this drug has done the damage and I can only hope that I eventually will have a 100% recovery. None of the docs will say it is this medicine. Of course most doctors out there are strictly "textbook" and do not know a damn thing about nutrition or natural medicine--all they know is how to prescribe drugs!

My husband had taken Statin drugs for several years and started feeling weakness in his leg muscles which also became painful. After several doctors and many tests he was diagnosed through a muscle biopsy with Myositis, specifically Inclusion Body Myositis. I am convinced that the Statin drugs have caused this. He now has to use a wheelchair when a lot of walking is involved as his muscles are getting weaker all the time. This disease effects all the muscles including throat muscles.

I WAS PUT ON LIPITOR AND TOOK IT FOR ABOUT 2 YEARS--THEN STARTED HAVING TERRIBLE LEG AND MUSCLE CRAMPS AND COULD HARDLY GET AROUND. I TOLD MY DOCTOR, BUT HE DID NOT THINK LIPITOR WAS THE PROBLEM. HOWEVER, I TOOK MYSELF OFF OF IT AND WITHIN A COUPLE OF WEEKS I FELT MUCH BETTER AND HAD NO MORE CRAMPS.

I WAS OFF OF IT FOR QUITE A LONG TIME AND THEN MY CHOLESTEROL WENT UP AGAIN AND I WAS PUT ON ZETIA. WELL THE SIDE EFFECTS FROM THAT WERE TERRIBLE ALSO. I STOPPED TAKING IT, AND I AM FEELING LIKE MY OLD SELF AGAIN--HAVE DECIDED THAT THE CHOLESTEROL WILL JUST HAVE TO BE WHAT IT IS, I WILL NOT EVER TAKE ANY MORE STATINS.

After having a cardiac cath and stent placement, I was put on Zocor to bring my cholesterol down. After a few months, I began to experience extreme muscle pain and was unable to urinate for 2 days. My cardiologist took me off Zocor and gave me Vytorin. Again, the same symptoms, which were severe enough to stop going to the gym. I wasn't able to walk on the treadmill, much less the ellipticals. When I called the cardiologist again, he wanted to have me switch to Lipitor. He would not believe me that the statins were adversely affecting me. I did not take the Lipitor, and instead take 3000mg fish oil to help. The muscle pain has never gone away, although the kidney function is better. I would bet that the cardiologist never reported my complaint to anyone.

The man with whom I shared my life was diagnosed with ALS in Oct. 2006. He had been taking Zocor for several years, and had begun to experience carpal tunnel-like symptoms in his left hand. He also soon began to lose muscle mass in his legs and upper arms. He experienced difficulty swallowing and soon began to slur his words. He did a lot of research on his own and told me that he believed he had ALS symptoms and that they might be related to the statins he had been taking. He stopped taking the drug and then began to seek medical advice, starting with an orthopedist. We hoped that he just had carpal tunnel or some other fixable problem.

In Oct. 2006, he was referred to a neurologist who diagnosed the ALS. By the new year, he had more or less given up, and it had become very difficult for him to swallow any food. He was living on Ensure. He was very healthy prior to the use of Zocor, except for the mildly high cholesterol. His parents lived to be 87 and 93, but he died in March at the age of 55. I have read enough anecdotal evidence to be afraid to follow my doctor's recommendation to take Zocor. I only wish that my sweetheart had not ever taken a statin drug.

I hope that columns like yours will be able to light a fire under the research community and the FDA to find out if this suspected link to AlS could be true.

I have already reported this case to the FDA. My father took Lipitor for two weeks. He refused to take it after that because he said his legs bothered him when he took it. He was a perfectly healthy active man before taking Lipitor. Nine months later he was diagnosed with ALS.

Because he refused statins, the doctor told my mother he was a hard head and didn’t listen. His cholesterol was only slightly elevated; borderline high. I remember him telling his ALS doctor that Lipitor caused his ALS, but the doctor told him that is not possible.

I find it terrible that doctors refuse to listen to their patients, and to an extent, almost ridicule them, when they try to save themselves from bad advice. I am not sure what is the bigger evil, statins possibly being the cause of my father’s death, or the doctors refusing to listen, possibly allowing more people to die.

I woke up to a cup of Joe, started reading the newspaper when I almost droppd my coffee. Wow--it's our story I am reading. I couldn't believe my eyes about the article of Lipitor suspected in neuron diseases. This was a great concern to me because not only was my mother-in-law diagnosed with Lou Gehrig's disease (ALS), she was also on Lipitor.

Days went by so fast we all began to think mom was just giving up the will to live as she got older. One day she fell and broke her hip, complained of joint aches, lost memory here and there, started limping on the opposite side of her hip surgery, lost movements of hands, w/chair bound, unable to speak, bed fast, constantly unable to keep comfortable and passed shorly afterwards.

My husband is also on Lipitor and has been for a couple of years now. He has complaints of joint discomfort and who knows what else--he doesn't like to complain.

Thank you so much for waking me up to this. Now if we could just wake the FDA up, we will be doing some good! I am going to suggest to my husband to stop taking the Lipitor, visit the Herbologist, then I will keep you informed on any changes.

P.S.: I failed to say my mother is also on Lipitor. When they both went to the doctors, they pushed them away stating they would change their meds. Well if you have never seen how fast Lou Gehrig's disease works it's just horrifying. First they have their ability to speak, think, walk, and just live, and then it's all taken away. Why? Yes, we will never know; God is the only one who knows the real truth. But it will still always be in the back of our minds, should it have really happened at all. Now the real question we all write in and tell our stories but how many lives are going through about the same scenories as my family is because doctors are stating it's just a side effect. Is it a side affect to take a life because this is what is happening.

My father (in his 60s) was given Lipitor several years ago. After complaining about leg pain/leg weakenss and told to continue taking Lipitor, he was finally diagnosed with Lupus! At the time of his diagnosis his doctor told him he felt it was "drug induced" Lupus. While still living as of now, his Lupus has caused him immeasurable pain and challenges that this "healthy as a horse" kind of guy did not need to experience.

In 2000 I was on Zocor and then in 2006 vytorin. At 1st I just had achey legs. I complained to my doc (had changed several xs) but it was working so well for my cholesterol they didn't change it.

I was a tennis player, physically active w/3 younger sons and in '00 a widow. I dismissed the aches. But this summer, I complained again and my doctor did a muscle enzyme test and I had significant inflammation of my muscles.

I have not played tennis since 200l, could hardly walk. Had trouble standing. If I sat, I had to hold on to something to get up and would have to shuffle my feet to move! I found it difficult to go up/down stairs, had to take them one at a time. I had gained signifcant wt. after my husband died and attributed a lot to the wt., my age (50's), and lack of exercise, menopause. (I use to exercise 3x/wk, walk, and play tennis, and had no wt. issues).

I stopped the vytorin 3 mos. ago... my wt. is coming off slowly, I can cross my legs at my knees(couldn't do that at all before), it no longer hurts to have someone massage or touch my legs (pedicures), and the horrible leg/foot cramps I endured have almost stopped. I have my energy back. I was diag. w/ o. arthritis in my knees/inflammation in Dec and told not to walk, etc. I took OTC pain relievers per the ortho's instructions. Now, I take none and my knees are basically fine.. I think they missed it.

Hearing/reading these scary stories about ALS... do something. How many people are crippled because of these drugs?? At least they could recommend that their docs check their MUSCLE ENZYMES annually?? like they check the liver enzymes... this is serious! I am lucky, I'm improving but I will NEVER go on a STATIN drug again... I'd rather die of a heart attack.

I just read the article linking cholesterol lowering medications to ALS and possibly other neuromuscular diseases. After being on zocor and tnen lipitor for a few year I was dignosed Parkingtons disease and shortly there after my wife who has told she had ALS. She was taking lipitor. She pasted away in 2005.

I took Lipitor in 2002 for 5 months. Muscle weekness started in my hip and thigh gradually after taking Lipitor for just 3 months until I had trouble walking and knew I would have to use a cane. After checking on the internet for side effects, I called my Dr. who told me to discontinue the Lipitor. It was more than 2 months after stopping the Lipitor that the muscle weekness was completely gone.

I was on Lipitor for years and did not notice any weakeness until a few years ago. I attributed it to getting older and putting on weight. I stopped taking baths when I could no longer get up out of the tub. The crisis came when I sat down and could not get up since there was nothing to hold on to. Then I fell 2 times and broke my big toes and nose.

The doctor checked my cpk levels and found them to be almost 6000. I truly feel that in a few weeks I would have been wheelchair bound. In addition, about 3 years ago I began to develop itching sores all over my body. The dermatologist thought it was a reaction to some medication. I did not think so since I had not changed any medication in years. Now that my cpk levels have come down to normal (it took over a year), the sores have also gone away. I am sure all of this is a result of taking Lipitor.

I read with interest in my sunday paper about the lady whos mother was on a statin drug to lower her cholesterol. According to the daughter her mother developed ALS. I just lost my brother a few months ago to ALS. He was also taking a statin drug. And he too was only 57 when he died. He had been on the drug since 1996. Why won't the FDA wake up!

I was on Zocor for just a few months. Developed extreme pain in the right calf. Doctor had me stop right away. Tried me on Zetia, also had leg pain. Not sure if the pain was left over from the Zocor, or from the Zetia. Does this lead to permanent damage?

my mother died last November with what appeared to be bulbar palsy ~ it was a horrible ~ she was 100% expressive aphasic with many debilitating neuro sx. She had a very poor gag reflex and choked frequently. She had been on lipitor for many yrs and remained on it till the end. I am very interested in learning more about this connection.

I have severe family history. My doctor said I need to be on Lipitor or my cholestorl will never come down. I had a heart attack at 42 and a stent was put in. I also had quaduple bypass at 47.

The real story is I have been on all types of statins for 20 years. The past 6 months I have been on Lipitor 40 mg.

I CANNOT EVEN GET OUT OF BED. EVERY JOINT, MUSCLE, BONE IN MY BODY ACHES LIKE YOU WOULD NOT BELIEVE. DOCTORS SAYS I AM ALLERGIC TO LIPITOR BUT I HAVE TO TAKE IT OR I'LL DIE. SCARED. I DON'T KNOW WHAT TO DO ANYMORE. ALSO MANY OTHER SIDE AFFECTS. PLEASE--ANY SUGGESTIONS?

I have been dianosed with ALS.
For 9 years I was walking 4 miles, 5 days a week. Had a mini stroke - was getting over it and still walking. I was put on Crestor - started getting weaker - thought it might be the stroke. Had test and was called to stop taking Crestor - had been on it a year. Now my speech is slurred and have to have a walker to walk.

I have been dianosed with ALS. For 9 years I was walking 4 miles, 5 days a week. Had a mini stroke--was getting over it and still walking. I was put on Crestor--started getting weaker - thought it might be the stroke. Had test and was called to stop taking Crestor--had been on it a year. Now my speech is slurred and have to have a walker to walk.

My husband was put on Crestor and he started having Hot Flashes. I checked to see if that was stated as a side effect and found it was not listed.

They were really bad, maybe 3 an hour. Took him off crestor and they stopped.

I am a 61 year old white female in generally good health with a normally high cholesterol level even on Lipitor 20 mg. I have taken this drug for over 10 years until this early summer.

Over the past ten years I have had episodes of muscle weakness, tiredness, forgetfulness sporadically and my doctor never would associate it with the drug. This June 2007 I had symptoms of a stroke, not able to carry on conversations without stopping to think of the words I wanted to say. I couldn't concentrate, read, sew (which I have done all my life). Couldn't read directions and follow them.

I quit my job thinking I was just stressed out. My physician also thought I may have had a small stroke but when the symptoms continued into flu-like symptoms and then over the next couple of weeks got so bad I could hardly walk, couldn't sleep for the aches and pain in my muscles. No amount of Advil or Tylenol would dull the aches. I also have had IBS symptoms for the last five years, sometimes very severe and no meds helped.

Needless to say, my physician and I came to the conclusion that this was related to Lipitor and I stopped it. I felt like it was going to kill me, I didn't have a stroke though.

Now, four months later, on no cholesterol meds, my levels are still good, my mind is clear, my IBS symptoms are gone, but the muscle weakness and pain are still present. Walking, running the sweeper, any stretching will bring on severe pain for days. Unable to help me further, I am being referred to a rheumatologist for evaluation.

I might add that my muscle enzymes are still within normal limits and my RA screens are normal indicating no arthritis detected. I hope that someone will soon wake up about the statins and realize how harmful they can be.

Thank you for the opportunity to tell my side of the story. I am currently taking a liquid form of BioStrath, a Swiss-made energy elixir to build up my immune system. Too early yet to tell how it is working.
GAK

I am writing for my mother, Dorothy. For a long time, she's taken Lipitor; she is now 78 years old and has a degenerative neurological disease that has been diagnosed as a subset, and rare form, of Parkinson's disease (possibly corticobasal ganglia degeneration).

She continues to deteriorate; has low energy, hard for her to speak and to understand her, can barely walk and needs assistance walking with a walker, needs assistance in showering and going to the bathroom. She tires easily and is totally dependent on others; they see decline in her brain although she is 100% cognitively (for her age of 78). She suffers from depression although had never been clinically depressed until she faced this disease.

Please let us know if there is any treatment. We have tried so many things that do not work.

In 2000 my husband started taking Lipitor for a cholesterol reading of 246. After about 3 months, he started having severe muscle cramps in his legs. When he was driving, he would have to stop the car and get out to relieve the cramps. He stopped taking Lipitor at that point, and the muscle cramps stopped. But in 2001 he started stumbling. He characterized it as "foot drop" in his left foot. It continued to get worse and he saw a neurologist who ran an MRI and advised him to see a neuromuscular specialist at Barnes Hospital in St. Louis. After numerous blood tests, muscle tests, nerve tests, etc., he was told to get a muscle biopsy which confirmed a diagnosis of ALS in May of 2002. He has since lost all strength in his arms and legs and must be helped into a chair and bed. He has gone from a weight of 175 to 120 in the past year. His voice is much weaker, but he can still swallow most things. His breathing is still OK. He doesn't appear to struggle to breathe, but tests show he has lost quite a bit of lung capacity.

When he saw the neurologist for the first time, he said that he felt that Lipitor had caused his problems. The doctors basically ignored his contention, but he is still convinced that Lipitor was the culprit.

ALS is a devastating disease which has deprived my husband of being able to play with his grandchildren (ages 2 and 5). He had so looked forward to having grandchildren because he had been an elementary school principal and always dearly loved his students. He had been an athlete his entire life and it is so sad to see him in his debilitated state.

We are sure that Lipitor was the trigger for his illness and this information should be made public so that no one else will suffer.

Saw your article in the paper (Post Dispatch 11-5-07) concerning Lipitor (statin drug) and related problems.

I had taken Pravachol for maybe two years and subsequently developed sore shoulders. When I complained of this shoulder problem my Doctor took me off Pravachol and put me on Lipitor.

After maybe two or so years of taking Lipitor I fell in my garage when my ankle gave out on me. I told my Doctor I would not take any more statin drugs as a result of the problems I have been having.

He agreed, reluctently, with my assessment. although I still had numbness in my left leg and calf, my ankle remains stiff, and the left side of my foot and three small toes still tingle. The Doctor recomended a nerve test.

The Neurologist who conducted the test said I had Peripheral Neuropathy, and that my peroneal nerve may have been damaged or stretched due to the fall. I had an MRI on my back to be sure that the problem was not associated with my previous back surgury in 1984. My Nerosurgeon said he saw no situations from the film that would require surgery or related issues to cause my current problems.

This all brings us back to the only medication I have taken in the last twenty years has been Pravachol and Lipitor. And since taking them I have had problems with shoulder pain, leg and foot pain, as well as cramps in my left leg. While I have read that some folks have seen relief after stopping the medication I have not had that good luck.

I think it is time for the FDA to start looking at the long term effects the statin drugs are having on people.

I am finding this information amazing. We have had my mother-in-law to her doctors for 2 years now and they can't seem to find anything wrong internally. It started when she first took a statin drug
briefly about 3 years ago. Her primary doctor changed her script 2 or 3 times. She kept feeling weaker and weaker as time went by. After about 5-6 mos of statins she stopped taking them, told her doctor that she felt they were causing her weak state.

After being off of them for 4 mos. she still was not getting any better, in fact she got worse. We changed doctors who then gave her an MRI and a full battery of blood work and CAT scan. It showed she had been having mini strokes, as they explained it. After rehab for her leg weaknesses and muscle deterioration in her arms, a "drop foot" condition, and now speech and swallowing problems, we are left concluding that all of this was started over statin drugs.

This woman never took anything stronger than an aspirin until given the statin drug and today refuses to take anything. She is 77 years old and has been deteriorating consistently over the past 2 years. After reading peoples' stories on this site, we feel now we can suggest this to her doctor. Someone needs to pay attention at the FDA. Peoples lives are being destroyed over this, and the doctors seem clueless.

I suffered a heart attack at the age of 41 (family history). I was treated with Ethmozine (moricizine) till I complained to my cardiologist of numbness & weakness in my feet & hands. I was put on Lipitor & over the years the numbness & weakness progressed. Was discouraged about the doctors defending both medicines not being the problem, I continued until I came down with the flu & could barely walk. Finally was diagnosed with CIDP, a Guillanne-Barre type disease. (chronic inflamatory demylienating polyneuropathy).

I am being treated with immunoglobulin (IVIG) infusions every three weeks which keeps me out of walkers, canes & wheelchairs depending on the severity between infusions.

Could there be any connection with this problem and the drugs mentioned?

Am now being treated with Vytorin.


Bill Hare

I am a 64 year old man and was active in the outdoors and had my own business. In 1998, I was given nerve conduction tests and was told that they were "compatible with a peripheral neuropathy". The doctor classified my particular problem in the charcot marie tooth syndome family. In 2004 a heart doctor tested my cholesterol and told me that it was high. I was given Lipitor for my high cholesterol.

Up until that time I had annoying problems with my peripheral neuropathy problem but nothing major. After time went by, while taking Lipitor, my muscles weakened considerably, I had sore legs and feet, I had major leg cramps, no energy, and was generally lethargic to the point that I felt that I had no option but to terminate my business dealings December 2006.

As of the 2nd of November 2007 I stopped Lipitor after reading a charcot marie tooth web site, talking to two doctors, and talking to 5 recent liptor quitters, all who had negative reactions with it. In 4 days since I quit, my problem symptoms are improving and now comes the longer wait to see how much additional damage was done to my system or how much recovery I will achieve.

LIPITOR IS NOT FOR EVERYONE... Especially someone with charcot marie tooth syndome, or a peripheral neuropathy problem. I spoke to my doctor about my problem and feel that they are not in touch with reality, about the number of people experiencing problems or to what extent they are having problems with this drug.

My wife began taking Crestor in 2004. This spring (2007), she began to notice muscle fasciculations in her left arm. She reported this to her doctor in June and stopped taking the Crestor. She has now lost a lot of strength in her left hand and the fasciculations are now in all of her limbs and her torso. Last week she was diagnosed with ALS. That statin drug usage causes neuromuscular pathology seems undeniable. I think Crestor triggered my wife's condition.

I was on Lipitor for years when I started to have pain in my right arm....then a tremor started. I stopped taking the Lipitor and the pain lessoned but did not go away. I have been told I have Parkinsons but the drugs don't help. I blame Lipitor but the Dr.'s don't.Anyone one else have a similar occurance?

I took Crestor (sample from the doctor) for two days. On the morning of the second day, I had a strange sensation in my back and then my back muscle spasmed severely. The pain was unbelievable. It took hours to settle down so that I could even move. Then I had another spasm the next morning, even more severe. That took longer to settle down before I could move.

Upon the first spasm, I stopped the Crestor since my doctor had warned me of this side effect. I had never had back problems before taking Crestor and haven't since not taking it anymore. It's been four months since the spasms and that muscle has not fully recovered. I don't know that it ever will.

My doctor prescribed three different statins, the last one being Lipitor. I experienced severe muscle pain in my legs with all of them. Before I finally convinced my doctor that it was the statins, I was real close to getting around in a wheelchair.

I reported my ALS case to the FDA using this web site, by clicking begin. It took less than 5 minutes.

https://www.accessdata.fda.gov/scripts/medwatch/

They called me and asked me a lot of questions about the case. They are really interested in this.

I have been taking Lipitor for about 8-10 years. I have experienced bad lower back pain from hip to hip and over the last 10 months or so, I've experienced occasional severe muscle weakness in my left leg and have had the leg collapse on numerous occasions. Don't know it's related to Lipitor but I'm going to stop taking it.

I have been on Lovastatin 20 mg for 6 months. After the increase in my muscle pains and weakness in my body and cramps in both of my legs, I stopped taking this medication. My left hand is very weak and feels asleep. One morning I couldn't get out of bed due to severe pain in my muscles and weakness all over my body. I'm on my way to the doctor.

I had been on Lipitor for a short time in 2004, seemed to disagree with me, so the doctor prescribed Provachol, it seemed better. 2005, I awoke with muscle pain in hips and shoulders, diagnosed as Polymyalgia Rheumatica. I have been on Prednazone.

I saw an article about possible problems with statins and decided to stop taking Provachol and the drug for bones. I was starting to have trouble swallowing and was diagnosed with sleep apnea. My snoring was waking me up! My swallowing is better, and the pain isn't as bad, but am still on a low dose of Prednazone (5 mg) and trying to deal with cholesterol with a better diet and natural means.

I do not want to go back to statins. I was fine before this all started, except for cholesterol. Thank you. I hope this may help someone else.

I have arthritis and fibromyalgia. Somewhat under control. Then the Dr. put me on a drug for cholesterol that caused immediate stomach problems. She then changed to lipitor. I was checked 30 days later and was told the lipitor was lowering the count, but I needed to add zocor.

A few weeks later I was having real problems in my upper arms and the muscles in my thighs. It got so bad I was using a cane. I was stumbling and had difficulty walking.

I usually figure it has to do with the weather, but I had never felt that bad before. At the pharmacy I asked for the info on these two drugs. At the bottom of the sheet it mentioned muscle pain.

I stopped the pills that day. After a week I could tell a difference. It has been 3 months, and I am so much better. I still ache but not nearly as bad. I told my Dr. and she said, " I guess you should start taking fish oil tablets."

My mother died about three months ago, with what was diagnosed as MS one month before she died. However, I am not convinced that was correct. Her symptoms were more like ALS. She became weak, fatigued, uncoordinated, dysphagic, and unable to speak along with muscle wasting. She was golfing in March and she died July 29th. She had been taking statins. I am an RN working in interventiional cardiology. I am concerned about the correlation, as most of my patients are taking these medications.

My husband began taking Lipitor in May 2006 after triple bypass surgery. By January 2007 he noticed he was having difficulty buttoning his shirt and in May 2007 he was diagnosed with ALS.

He has questioned his neurologists and the cardiologist about Lipitor and they all say there is no connection, and while I know that's currently true, neither is there any proof to say that there ISN'T one.

In light of the WHO paper advocating discontinuation of Lipitor and similar drugs in cases of ALS-like symptoms, I fail to understand why these doctors are not beating down our door to take him off the drug.

He called his cardiologist last Monday (November 5, 2007) and left a message that he was going to stop taking Lipitor that same day and would like a phone consultation with the doctor. A week later, he is still waiting.

Please speak out if you or someone you know has (had) problems of this nature. The more people who come forward, the more likely it is that broad research will be undertaken.

My son brought your article in the Sun Paper this past week regarding problems regarding "statin" drugs. About 4 and a half years ago I was put on Provocol because my cholestoral was very high by my PC Dr. I was on it approximately 8 months when I began having trouble with my left leg and back. I would be walking and my leg would just give out on me and I would fall.

I talked to my PC about this and he just shrugged his shoulders and said he didn't know why this was happening. I had had knee replacements and so I went to see my orthopedic surgeon and during that visit I fell in his office. Upon doing x-rays, etc. that very day he told me that there was absolutely nothing wrong with my knees causing the problem I was having. He sent me to a neurologist and this resulted in a CT scan to see if I had a tumor, etc.

When the results came back there was no tumor, etc. but, it did indicate that I had nerve damage in my left leg and back. She was certain that my problem had been caused by the statin drug Provocol and told me to immediately stop taking the drug and to NEVER take another. She said that my case would be reported. My walking/falling by this time was quite severe and I had to start using a walker.

I graduated to a cane in approximately 8 months and used the cane for almost a year. I am much better now but, still encounter some weakness in my left leg and lower back as the nerve damage will always be with me. My PC Dr. even after getting a report from my neurologist is in denial that the provocol could have caused my problem. I know that there are many many persons on statin drugs and they should be aware of the problems these drugs can cause.

My mother was on Lipitor for a year and developed muscle weakness and slurring speech. She was misdiagnosed a few times before being told she has ALS. I was on Vytorin for a few months when I experienced extreme muscle pain and weakness and then she showed me the first article about Lipitor possibly being the cause... I haven't been on it since and I believe this should truly be looked into!!!

I have been taking zocor for about two years. I began having pain in my knees, elbows, fingers, etc, but chalked it up to arthritis. I am 61. It got to the point that I couldn't carry my grandchildren up the stairs without intense pain. I stumbled and fell twice, for no apparent reason. When I couldn't walk up the stairs without pulling myself up on both railings with my arms, I stopped the zocor. I feel like my old self again, several weeks later. Also, during that time, my blood sugar went up to prediabetic levels. Has anyone else experienced this? I have never had a problem with blood sugar before, am not overweight, eat a healthful diet and exercise regularly.

My father just passed away of ALS less than a month ago on October 17, 2007. Prior to his diagnosis, he had high cholesterol and high blood pressure. He took Lipitor for at least 3 years or more.

He was diagnosed with ALS in May 2006 and since then his health and body detoriated very fast. He was completely in bed, lost the ability to eat, walk, speak and eventually he had severe breathing problems.

I am very upset to hear about all the horrible side effects different people have had. After watching my father suffer for a year and 5 months, I really want to help to FIGHT ALS and support its research.

I am very interested in pursuing all possible causes to ALS. Please let me know if I can be of any help. I am ready to support!

I have been on Lovastatin 40 mgs. (generic for Mevacor) for about 2 yrs. I have experienced the the same symptoms and stopped taking it for about 4 months. My last blood test showed my cholesterol was up to 259 and when I told my doctor I had stopped taking it because of the way I was feeling and hurting, he said I needed to be on it. He's got me on 1 1/2 tabs. nightly.

I am going to discontinue it on my own again. I am 65 yrs. and it's not worth the pain, weakness and exhaustion I feel.

Thank you for letting me voice my feelings and concerns about statins. I am surprised nobody else has mentioned Mevacor or Lovastatin.

My wife took Lipitor for two years. In 2006 she was diagnosed with ALS. She is a nurse and has her BS. She is completely paralized and her speech is gone. She believes this drug has caused her to get this disease. I believe that because of this drug Lipitor I am going to lose my wife of 31 years.

I started taking LIPITOR Feb. 2001 and suffered leg weakness. In Sept. 2006 I was put on CRESTOR and my leg weakness continued. In Aug. 2007 I went to the doctors for chest pain on my left side and he treated me for ASTHMA. This cause my blood pressure to go very high. So I stop taking my ASTHMA and STATIN drugs and the pain in my chest went away.

I used to walk 2 or more miles a day and go dancing every month before taking STATIN drugs, but now I had to stop dancing and have to push myself to walk around the block once a week.

Since stopping taking the STATIN drugs, I am slowly getting my strength back.

I have been on the statins Pravochol, Zocor and most recently Lipitor. I have all the symtoms of ALS. I experienced muscle pain and tiredness the entire time I was on the statins but the Dr. insisted that it wasn't the medicine. I have trouble talking now, have trouble walking, and arms are weak.

My spouse began taking statins at least 12 years ago. About two years ago, he began having slurred speech and balance problems. We have been to two neurologists and had complete tests, and they have found nothing. They have no suggestions about what to do.

His internist took him off Zocor and he has been off about two months. He does not seem to be better and we are worrying about permanent damage from the statins. The phrase the "statin shuffle" hit home. Where is a doctor who is willing to treat this condition?

My mother was put on Crestor at the age of 78. She started having severe leg pain and fatigue. When she started having bouts of falling and muscle atrophy she sought a diagnosis from Mayo Clinic. Up until this time my mom was a remarkably healthy woman and never had the need for perscription drugs. She was diagnosed with ALS and died Dec. 17, 2006 at the age of 79.
It sickens me to think that IF there is a link between statins and ALS (Crestor being the trigger), Mom would most likely still be with us today and would never have had to suffer thru this hideous disease.

I took simvastatin for 2 months. During this time I had
extreme muscular pain in my neck, shoulder, back and hip. I felt like an old woman. I hurt constantly, I had no relief whether I was sitting, standing, or lying down.

I suspected the medication, and after I stopped, I felt
much better over a period of weeks. My physician suggested taking COQ10 with the simvastatin but it did not improve the pain. I am planning to address the high cholesterol with a different approach without statin drugs.

I had undergone angioplasty for a single vessel disease in AUGUST 07. Since then I am on atorvastatin 40 mg daily. In October I developed pain in left buttocks radiating to back of left thigh and leg.This was diagnosed as sciatica. Mri scan, ct scan x-ray hip pelvis were normal. I stillget the pain while walking. Can atorvastatin cause this pain? Can anybody advise?

My husband took Lipitor for more than several years. He had a knee replacement in 03 and his leg muscle deteriorated within the first year, and no amount of exercise could bring it back. He then developed swallowing problems and breathing problems to the extent of going to the emergency room, and they found nothing wrong. He had lots of pain in his mid-back, and it then was all over his body with no relief even with pain medicine.

His muscles weakened so much that he could not eat foods unless they were put in a blender, and he went from 165 to 113 pounds and all muscle loss. He fell many times and could only walk with a walker, he had memory loss, movement in his thumbs so bad he could not pull a zipper or hold a fork. He was an active man before all this happened, exercised every day, we had no clue as to this disease before that. It took him in 4 months.

He had almost every type of tests to find his problem with many different doctors and no one could find his ALS until the day he died, One doctor said he thought it was ALS and he sent us to a specialist for that disease one week before he was actually diagnosed with ALS, and they diagnosed it on the morning of his death. He had all the side effects linked to Liptor. had even asked our internist about taking him off the Lipitor and he said "I'm sure that's not the cause of his muscle loss."

We had told all our doctors that since his heart, lungs, kidneys, liver was all normal that it had to be a muscle disease and no one would listen. He died in July 07. This is a horrible disease and a horrible way to die.

I read with interest the letter in the Nov. 5th, 2007 issue of the St. Louis Post Dispatch concerning the person whose mother died in July 2007 from ALS. My mother took cholesterol-lowering drugs for years and also died from ALS in August 2000. I had wondered about these drugs being a cause of ALS and then about a year after her death, I read an article that there may be a link between ALS and statins.

Her symptoms started with severe leg pain which was so painful she had to quit working. She fell and broke her hip in June 1995, recovered, but had trouble walking and then fell and broke her ankle in April, 1997 and never was able to walk again and needed a wheelchair. The disease was finally diagnosed in Nov. 1997 after much testing and a muscle biopsy.

This disease is hideous and I often wonder if mom would still be here today if she would have stopped taking the statin drugs.

I took Lovastatin for one year, incrementally increasing the dose up to 40 mg. My total cholesterol was in the 240's. The statins did little to help the triglycerides and HDL. Over the year I had two abscessed teeth, pueumonia, and a couple bad sinus infections. I felt weak and depressed most of the time. I eventually developed hematuria and had transitional cells in my urine.

When I quit the statins, my doctors acted betrayed. Although, the hematuria is noted as a possible side effect, my doctors said they just have to put that on the labels, that the statin did not cause the hematuria.

I have recently tried red yeast rice, niacin, and flax seed oil, and CoQ10. I hope the red yeast rice isn't harming me. My energy level has been better. I also have Hashimoto's Thyroiditis, which is well controlled on medication.

Thank you for your article-- it always helpful.

I get mad reading all of the comments posted here, since I have suffered myself from statins. I was on Pravachol approx. 8 yrs. I had a job that required me to stand a lot. My legs would ache and throb most of the time. I was then put on Lipitor and I started getting terrible leg cramps at night so bad I cried.

Doc took me off Lipitor and the cramps went away. Then he tried me on Vytorin and the third night the cramps returned. Took myself off statins for about 6 mos. and my cholesterol went up to 250 from 160. I'm back on 10 mg. Pravastatin about 4 mos. and so far I'm okay, but I've also been taking Co Q 10 for about 1 yr.

I believe statins do more harm than good. Doctors should be telling patients to take Co Q 10 along with the statins. I was told I suffered from Rhabdomylosis, muscle breakdown. My goal is to get my total cholesterol to 200 and I will be happy. I also ride an exercise bike 3 times per week for 50 mins. at a time to build up my legs. I am 55 yrs. young.

My husband is 41 years old and has been on statin cholesterol medications for about a year. (First name brand, then generic). Over that year his left hand has atrophied to the point that he has no "meat" left. his hand is so weak that he can barely button his shirts or do anything that requires fine manual dexterity. The chunky part of his hand, b/w his thumb and forefinger is nothing but loose skin. He also experiences some tingling and numbness in both pinkies. Based on this web site and other research we've done, he has decided to stop taking his meds immediately and has an appt with a neurologist in 6 weeks.

Several years on Zocor. Diagnosed peripheral neuropapthy March 2007. Burning feet at time, cold feet come and goes, numb legs from knee to feet. Must pull on side rail to go up steps. On arising from chair must stand and wait for balance etc. Lower back aches early morning prior to arising. Holding my weight within 5 pounds since retiring 40 yrs ago from Army. Leg arteries from hip to ankle have excellent blood flow. Past 2 weeks having difficulty swallowing pills/food. Many thanks for the alert. Contacting my Dr. tomorrow concerning your article in Reading Eagle this 19th Nov 07. Thanx

My wife, Frances, has been taking Lipitor for approx. 2 years. She has developed slurred speach and difficulty swallowing. She has now stopped taking Lipitor for 3 days. Hopefully, her symptoms will clear up. Please contact me, if necessary.

I have been on statins (initially zocor and now vytorin) for about 4 years. I have been on vytorin for about two years. I experienced left heel and partial foot numbness for about 4 weeks in 2006. Recently have been experiencing left and right heel numbness which extends out to the outer edges of my feet and slightly up to my ankle on my left foot. I am concerned that there may be a link.

My doctor has advised me there is no medical evidence of such a link and that I should keep taking the vytorin. He did suggest x-rays which I have not done. Again, intially the numbness went away. I am hoping it will pass again. I would be interested in any medical literature suggesting a link between heel numbness and statins. Thanks, RAR

Since 1987, I have been on every statin made. The worst one was definitely Lipitor. It affected my muscles and memory more than the others. My energy level is very low and I need a nap almost every day. My hair loss is getting worse. It is frustrating when the doctor tells me to "try to stay on the statins a little while longer, they are keeping you from having a heart attack." My concern is, do I stop taking the statins and risk a heart attack or keep taking them and end up in a wheelchair? Something needs to be done ASAP.

I took Lipitor for several months and had muscle aches that felt almost flu-like. After I dropped the drug, I tried Red Yeast Rice, and to a lesser degree, had similar symptoms. I'm now trying Cinnamon Bark. Too early to tell. Maybe I just need the cholesteral?

I have communicated with hundreds of ALS patients internationally. The past three years, I noted a large percentage of the new communications were from those taking statin drugs. Weekly, I hear from around 10 people with the same symptoms and immediately know they are on statins. I attempted to post this on the www.alstdf.org site at Mass. General only to be deemed a troublemaker. I noted there was a discussion between the moderator and patients questioning the connection

Dr. McCarthy said that the drug may provide promise and there would be clinicals using Lipitor as a treatment! He also said there may be some casualties. Well, so what, it's only a human life!

I make referrals every day to non-toxic practitioners in hopes the damage can be corrected. Just completed a five year research project; ALS IS liver disease and we intend to prove it [and causes]

Linda
www.alsalternative.com

My beloved father passed away from ALS-like symptoms in September 2002. He was a vibrant, active man who had been taking Lipitor for only 5 months when he was diagnosed with ALS. Six months later he was dead at the age of 60.

The doctors were baffled at the rapid nature of his degeneration. Also, at the age of 60, he was outside the normal age for typical ALS patients.

I have long felt that his illness was caused by an outside influence, not his overall health. For the last several years I have been mentioning it to anyone who will listen that I believe Lipitor was the cause of his illness.

I am verry sorry to see others fall victim to the "side effect" of statin drugs and feel that something should be done about it. The more reports that are surfacing and the studies that are being conducted by the FDA and the WHO are encouraging.

We should band together and go after the companies that produce these drugs. The indiviuals who have suffered from this might be collateral damage to the pharma companies, but they are our mothers, fathers, brothers, sisters and children. They are living, breathing human beings who should be informed of the risk before they are told by their doctors that they should try this new drug that may help lower their cholesterol. They should have the information available to them to make an educated and informed decision concerning their health and possible side effects.

My father would have had a better chance not taking any drugs and if he knew the possible side effects probably wouldn't have taken them. My sons won't get to know their grandfather and my sister and brother won't get to share their accomplishments with the man who was their role model and teacher... we miss him dearly and want to fight on in his name...

My father had been on a statin drug for two years when he was diagnosed with ALS. He died 7 months later. He started experiencing symptoms several months after
starting the medication with
slurred speech and difficulty
swallowing. Thank you

I started taking Lipitor 10 mg about a year and a half ago. Over the period I have noticed a few changes: studying to get my CPA I found it increasingly more difficult to memorise; this summer my left arm swelled up to an alarming size and the location of the swell was moving around--all the exams could not reveal anything; the last episode was in the past two weeks where I came down with a very sudden neck and shoulder pain (incapacitating), and suddenly the same type of pain was in my elbow. All this accompanied by a lot of twitching, most severe was lost of muscle behind the arm (it seems to have melted away). I decided to take myself off Lipitor. I'm getting blood tests to see how my ck levels are doing and find out if this is permanent.

I HAVE BEEN TAKING LIPITOR FOR AT LEAST 10 YEARS IN INCREASINGLY HIGHER DOSES. I STOPPED 2 MONTHS AGO SUSPECTING IT HAD CAUSED MAJOR PAIN AND MUSCLE LOSS IN MY ARMS, SHOULDERS, HANDS AND FEET. I HAD BECOME A HUMAN LUMP OF SPASMATIC PAIN WITH BRAIN FOG AND EXTREME FATIGUE. NO. THE DOCTORS DID NOT LISTEN ABOUT THE LIPITOR AS A CAUSE. THEY FOCUSED ON REDUCING THE PAIN WHICH I DID APPRECIATE. SINCE I STOPPED THE LIPITOR, MY BRAIN FOG HAS LIFTED AND I CAN THINK AND REMEMBER THINGS AGAIN. NOTHING ELSE HAS CHANGED:SLEEPING TOO MUCH, BODY SHAKING, TREMBLING HANDS AND ARMS, MUSCLE SPASMS, SEVERE PAIN, HEADACHES WEAKNESS ALL OVER MY BODY AND A FEELING OF USELESSNESS AS A PERSON. NO DOCTOR AS YET HAS DIAGNOSED MY CONDITION, BUT THEY ARE TRYING TO CONTROL THE WORST OF IT.

What I have to say directly relates to this web site. I came here looking to find information about generic time release Wellbutrin vs original product.

While reading that article I was startled by this thread. I had been taking Lipitor for over 9 years. I had difficulty walking, climbing stairs, bending, and many other symptoms described here. Especially telling were the references to shin-splint like pains in the legs (exactly what I had). Another side effect was almost constant fatigue.

After reading this thread, I took myself off the drug immediately... It has been 6 weeks. Many of the symptoms have subsided dramatically.

I am awaiting the results of a blood cholesterol test. I am not sure I will ever go back on a statin no matter the results.

I do believe that I am very lucky that there has been some (not all) reversal in this condition. I walk much better, have more stamina, think more clearly, and in general lead a better life. I believe that Lipitor stole some of my life.

On the day that I read this article, I sold the shares of the company that makes this drug. I am sure that the company is aware of these problems, yet I am just as sure that the financial damage that this info. could lead to will force the company to deny every single possible truth presented here. This denial will lead to much more pain and suffering.

My new doctor said that he routinely has to take people off this drug due to the problems discussed here. My old doctor did nothing to deal with these pains, even though these symptoms were presented to him often.

Thank you for this site. I am very grateful. This information may have saved my life..

Certainly, this info has improved what life I have left.

Sun

I sent a report to the FDA but will share my story here. I took lipitor 10mg for two years. I noticed shortness of breath after one year. I subsequently had pulmonary function tests which I flunked but I was not responsive to bronchodilators.
I also had a complete cardiac workup which was negative.
I then developed a "nasal" quality to my voice followed a few months latter by slurred speech. My lipitor was doubled to 20mg and I developed weakness in my left hand. I was diagnosed with ALS.
I continued to take the lipitor for a few more months until I started finding antecdotal evidence of a possible link of statins to ALS.
Within one week of stopping the lipitor I noticed a significant decrease in fatigue.
I have continued with a slow progression of my ALS over the past year.
I think what is even more remarkable in my case is that I am a registered nurse with over 30 years of experience and was working in an ICU during this time. I was very vocal about my opinion that Lipitor was a contributing factor to my ALS. I hope that some of the doctors that I worked with are remembering me when they have patients on statins.

I took Lipitor in 1998. Within 3 months, I was in liver failure (enzymes 1000 times normal), had severe muscle pain, and cognition problems. Nine years later I continue to have disabling chronic muscle pain, liver changes, memory and verbal problems, and extreme fatigue.

Although my sister posted on this site last month regarding our mother's experience with Crestor and her subsequent death due to ALS, I simply wanted to reinforce the necessity of keeping the FDA informed.

We are now waiting for Mom's medical records to be copied (which God only knows how long that will take) so that we may fill out the FDA questionnaire thoroughly and accurately (and many thanks to Joe Graedon for forwarding our information to the FDA).

Bottom line: People, please don't drop the ball. I firmly believe that statins are a definite trigger for ALS in certain individuals. And, after reading all the comments here, it seems to be more prevalent than not.

This is more than a sad and sorry state of affairs. My mom was a healthy, vigorous, independent 78-year-old woman despite her high cholesterol (which she had her whole life; it runs in our family). And then she was coerced into taking Crestor... and then she developed ALS... and now she's gone (she died last Christmas).

Devastated? You bet. But more than that, I am furious that the drug companies have such a complete hold on "health care" that those two words seem to have little meaning for physicians who took an oath to "first do no harm." That doctors pass out pills willy-nilly without listening to the very real and serious concerns and complaints of their patients.

I can't have my mom back but I pray that someone, somewhere is paying close attention; that this tragic travesty will stop before any more suffer and die from this most hideous and heartwrenching disease.

So, Mom, keep ringing those wind chimes... we're fighting for you, big time.

A week of severe lower-leg cramps waking me up at 4 AM began after I had been taking CRESTOR for a few days. Those symptoms disappeared a couple of days after I stopped taking the drug. See the info about this exact problem at www.cholesterolscore.com

I had high cholesterol, 330, and was told to take statins though there is no family history of heart disease, and we all have high levels. First it was extreme abdominal cramps, then a change of prescription. For two years I took Lovastatin and noticed weakness and stiffness in my knees. Then this past Jan., I started to get leg cramps--which I have never had in my life before. Stopped the statins and have been working out, but my knees are ruined! Doctors has given me muscle relaxants to relax the cramps, but I need to use my arms to lift myself out of a seated position! I am now 54 and feel that my future active life has been taken by the statins and the HMO docs that prescribed them!

I have been taking Lipotropic (Atorvastatina) for the last 18 months. Three months ago I started suffering increasing pain in my legs, arms, joints and hands, especially at night. I thought it might be because of my age (61), or maybe the mattress. Then, two months ago, I developed very awful pain attacks that could be described as like being skinned alive. It was so severe that my husband hospitalized me at the first attack thinking it was a heart problem. I was hospitalized at Delray Medical Center for three days. The doctors performed a lot of tests: MRI, etc., but found nothing wrong... although my pain attacks did not stop.

It was a gastroenterology specialist I went to, after being released from the hospital, who told me to stop the Lipotropic and that I would be better in two or three weeks. I stopped the medication and slowly got better. Now it's already been two months under pain killers and although the pain has been reduced from agony to a level I can stand, I still have weakness in my hands. (I have difficulty even opening a soda can.)

I am a 52 y/o male that took Advicor for 4 years. In Aug. 06, I suffered a mild stroke and my doctor doubled the dose. Later that same month I began experiencing weakness in my right hand. In early 2007 the hand weakness progressed and my left hand became weak as well. I am now severely disabled in both hands and have lost muscle mass in my hands, arms and shoulders. I can still walk but my legs are weak. I have high CPk and Myoglobin levels, abnormal EMG studies and was taken off the Advicor last may. My doctor says I have Motor Neuron Syndrome or ALS-like illness. What are my chances of ever recovering or having symptoms stop progressing?

My father was on 40 mg of Lipitor for 3-4 months and started to develop weakness in his right hand. Two years later, he succumbed to ALS. Lipitor was the direct link, at least in our minds.

In April of 2007 my husband had a physical checkup at age 70. He was told he had type 2 diabetes and was given Gulcophage and Zocor. Within days he became strange, was admitted to the hospital twice for tests, the last time after taking a loud, screaming , uncontrollable fit while being hooked up for an EKG test. Twice the hospital dismissed him as being in the early stages of dementia.

His Dr. ordered an MRI, not believing he had dementia. The radiologist , reading the results of the MRI stated my husband had had one major stroke, and several recent small strokes. His Dr. then sent him to a neurologist. Two months later, the neurologist dismissed him as not having had a stroke concluding that he has encephalopathy, a brain damage, and prescribed SEROQUEL AND ATIVAN stating that there is nothing more that can be done except to use these pills to control his paranoia.

My husband had been a busy, dependable, capable, knowledgable limousine driver up until April of 2007. He cannot work now at anything. He is a totally different person, he has lost 55 pounds, lost his short time memory, and has very difficult days, filled with confusion, fears, and paranoia.

My doctor is big on prescribing medications in the name of prevention; so when my cholesterol levels were higher than the norm, she prescribed Lipitor. This resulted in leg muscle fatigue and aches that zapped me of the ability to ambulate with ease. After reporting this to my doctor, she changed my medication to Zocor. The symptons of muscle fatigue and ache became more acute, to the point of painful standing from a sitting position, painful sitting, painful walking, and diminishment in my athletic abilities.

I, too, like so many people, thought that perhaps I was overexerting in exercise or was disaligned; so I went to a chiropractor and over time realized that adjustments were not helping the muscle aches even when I was aligned.

Consequently, I have discontinued taking Zocor and have informed my physician of this. She wants to see me for a follow-up appointment and will, undoubtedly, make the pitch for some other medication to address the cholesterol. My decision is to pass on this.

I can't help but wonder about my family members who lived long and productive lives without these drugs. I will continue to look into the natural paths of healing. By the way, my chiropractor informed me about your website. Thank you for being available to us.

i have taken Lipotor, Zocor and Crestor, and until reading this was unaware my leg problems were because of these drugs. Fortunately, due to my new doctor I am no longer on these drugs. She has put me on Gemfibrozil 600 mg twice a day and my legs have gotten much better--the pain and tingling and numbness are gone. Yes!!! I don't think all the symptoms are all gone yet--I've only been on it since Nov. But I feel so much better. I also experienced weakness in my arms and that too is gone.

I cannot believe what an eye opening I have had today. I have been taking generic Simvastatin now for almost 2 years. Over the last 6 month I have been slowly getting worse. It started with pain in the neck, then moved down my back, then down the right leg and to the top of the foot. I thought I tore or slipped a disk in my back.

I was in such pain one morning that I ended up in the emergency room, pumping me full of morphine for 2 days in the hospital. Test after test showed nothing was wrong.

Still even two days ago I was with a neurologist to have a EMG test done and was told that the results were fine and that I shouldn't be experiencing this type of pain.

I'm 40 years old, just starting life with a 2 year old son. I'm walking with a cane because I can no longer walk on without severe pain. TODAY no kidding TODAY I found this site.

I have a follow-up appointment with my General Pract in the AM to discuss the negative results of my EMG test. I have been fully open with all of the medication that I have been taking. Even gave a list to the hospital when I was hospitalized because of this severe pain. I kept asking if any of the medications I have been taking could be the result of this. Over and over again was told NO!

I started thinking this was in my head, I am severely depressed, keep thinking how better off it would be if I was just dead, the pain would stop. NOW I FIND THIS SITE!!! IM ENRAGED. I'm printing this out and shoving it my GP's hands.

I'm not going to take this medication again. I only hope that the damage to my body is not permanent, and that I will be able to walk again without a cane. STOP THESE DRUG COMPANIES NOW!

My mother is another person who I believe cholesterol medicines caused her ALS. My mother is now in the end stages of ALS, having been diagnosed in August '07.

Mom started on Lescol last year but was taken off of it after she had an 'allergic' episode to it, but her former primary care physician didn't document what kind of reaction she had to it. According to her medical records, she refused to take another cholesterol medicine, until her former PCP found Tricor (non-statin), so she tried that one for about 1 1/2 months until she started showing signs of memory loss (she literally didn't remember anything from 2006), twitching in her legs, and difficulty swallowing & speaking. Her former PCP took her off of Tricor but did not want to!

Her symptoms never got better and continued to worsen. Mom has always been hyper-sensitive to medications, so she didn't take them.... she even made her own saline solution for her seasonal allergies.

I later requested her medical records and found of that her former PCP put her on a high dosage of Tricor and told her to take it 3 times per day (it's written in her records). Our family feels that the Lescol (statin) jump-started this disease (ALS) and when he placed her on the high dosage of Tricor (non-statin), that kicked the disease into over-drive.

We have communicated with Dr Graveline, and I have read his book about statins and feel strongly it caused her ALS. He's researched statins but non-statins do the same thing to the brain. I feel the FDA should not be denying the correlation/link/association between the two (cholesterol meds & ALS) and start doing research since that is their job! I think there's a lot more going on than what the FDA wants us to know.

Too many persons are asking if cholesterol meds caused their ALS. More persons are coming down with this disease now than ever before and cholesterol meds may be a culprit since statins have only been out on the market for approx 20 yrs.

The FDA needs to make the pharmaceutical companies tell the consumer the WHOLE truth, so we can make a decision as to whether we want to take the chance; if it is worth the risk. I will never take cholesterol meds now due to having to watch my mother suffer. Her doctor didn't think she would live to see Christmas, but she is a fighter... but close to the end. Our family knows cholesterol meds brought out ALS and kicked it into over-drive when she was over-medicated, no matter what the FDA says. Thank you.

As a physician, I have little doubt that statin drugs cause muscle aches, pain, weakness and neuropathy in some patients. I myself have had similar issues. However, the point missed by many of your readers, as well as by this site, is that many patients have had tangible success with statins. This class of drugs clearly helps many people. The question becomes one of risk versus benefit. Heart disease is the number one cause of death in the western world. Cholesterol plays an important role in heart disease, even in those of us who exercise regularly, don't smoke and eat a healthy diet. Many of us are predisposed to have elevated cholesterol levels, which is largely genetically regulated. Such individuals, on balance, likely benefit from statins. To suggest that statin drugs are inherently bad for all of us is irresponsible. Statins do play a role in the management of elevated cholesterol levels in many patients who are otherwise unsuccessful in bringing down their cholesterol levels.

Cardiologist put me on Vytorin in Jan 07 after heart stint because my cholestrol was SLIGHTLY elevated. Took it all summer and by October 07 had a physical because of weakness, joint pain and just overall did not feel well. Doctor said vytorin was cause of weakness and pain so I quit taking it and in 6 weeks felt good enough to start walking my daily mile before breakfast. Also discovered with my physical that now my glucose is 140 where before taking vytorin it was 90-95. Could there be a connection between the vytorin and the high glucose level which now puts me as a diabetic?

MY HUSBAND WAS ON LIPITOR FOR ABOUT 3 OR 4 MONTHS AND BEGAN HAVING MUSCLE PROBLEMS IN HIS LEG, HE BEGAN HAVING A FLOPPY FOOT AND LOOSING LOTS OF WEIGHT AND WAS DIAGNOSED AT MAYO CLINIC WITH ALS.HE STOPPED TAKING IT AFTER SEEING A COMMERCIAL ON TV ADVERTISING LIPITOR AND ONE OF THE SIDE EFFECTS WAS A MUSCLE PROBLEM.....MY HUSBAND DIED 18 MONTHS LATER FROM ALS. USUALLY YOUNGER PEOPLE GET ALS...IT IS RARE FOR AN OLDER PERSON TO GET IT....MY HUSBAND WAS 72 WAY ABOVE THE AGE WHEN YOU GET IT....LOU GERHIG WAS ONLY 37 WHEN HE DIED. I DON'T UNDERSTAND WHY THEY ALLOW THIS TO GO ON...I SAY TAKE IT OF THE MARKET.

I used Lipitor for about 7 years. I immediately developed short-term vitiligo 2 weeks later. I developed weakness in my arms and legs. I was given HRT which stopped the pain. My new DR. took me off both meds for a year. I have been taking Simvastatin for 6 months and a few weeks ago the ball of my right foot above and under the 2nd toe started hurting. My right leg, knee, hip, and lower back are aching. I also have sore, burning skin. It hurts when I touch it especially with cold hands. I just realized it could be the Simvastatin.

I was put on vytorin and within 2 months I spent 3 days in the hospital with A- Fib of my heart, the next weekend my blood pressure dripped to 80 over 60 and my kidneys were failing. I spent 4 more days in the hospital. I was sent home still sick.

I went back to the ER and was treated for nausea. My muscles also were real week and I stayed sick all the time. I also had pneumonia for 10 days during this time.

I realized I had been put on Vytorin just before all this. I missed about 4 weeks of work during this time. I took myself off of the Vytorin and within 2 weeks I was well and have not been sick for over 6 months.

My doctor never would admit the Vytorin was the problem. I hadn't missed a day of work because of sickness in over 10 years before this. I also went 10 out of 12 years of school with perfect attandance. I still have muscle weakness but nothing else.

Today I was delighted to hear your discussion about statins, especially Lipitor. I need to tell my story.

In June 2006, my wife and I retired from Atlanta to Roanoke, Va with plans for hiking and tent camping. Of course getting set up with new doctors was one of the first priorities.

I have had two Carotid surgeries: 1984 and 2006 in Atlanta. The month of September 2007 was spent driving and camping in the west : Illinois, Custer State Park, SD, Yellowstone and Grand Tetons before turning toward home. During this period I had absolutely no physical problems. After returning to Roanoke I began a series of tests prescribed by my Doctor. An EKG had shown a slight irregular heart beat so I was referred to a cardiologist for further tests which showed three leaky valves, also minor. This was in October. Setting the stage I will now give a brief on medicines prescribed.

My Atlanta Dr. had put me on Plavix plus 1/4 aspirin. After the leaks were discovered, my Roanoke Dr. took me off Plavix and switched me to Coumadin on Oct 18, '07. Lipitor was added on Nov 17. I soon began having muscle and joint discomfort but associated it with the fact I was not able to take aspirin, etc. for minor aches and pains. The joint and muscle pain increased to the point that Dec. 20 I was taken off Lipitor, am still off all statins and am taking Tylenol and Tramadol for pain. As long as I am upright I cam function pretty well. When I lie down I begin to hurt to the point I sleep most nights propped up with pillows. In two months time I have gone from a very active hiker, camper and gardener (I hand dug my garden, with a shovel of course) to a man who would be in great pain just to pick up a shovel.

I know this is long, but I need some suggestions as to how to get back to who I was September '07.

John Clark

i had a ct of 230 and was put on zetia 10mg. After being on it for 2 mos I developed intense back pain but did not associate it with the zetia, as I was also having to have a hysterectomy.

I stayed on zetia for 11 more months, until 2 weeks ago--I had a blood test in the middle of nov which showed my cholesterol had gone up to 287--my kidney level to 33 and my liver rate to 52.

Needless to say I think I have a definite reaction to zetia. I only hope that the pain goes away eventually so that I can get a decent night's sleep and can get active again. Also hope to regain my memory.

I have always had restless leg syndrome, but after I started taking Simvastatin approx. 2 yrs. ago it became uncontrollable and has made my life miserable. When I read your article, a flash of inspiration told me that the statin drug could be the culprit, since RLS seems to be a neurological problem. I am now taking Requip to control it but who knows what other problems that might create.

I have a concern that my ALS may have been due to the use of Lovastatin. I was healthy without any ALS symptoms prior to using Lovastatin. About 4-6 weeks after I started I began to
have muscle cramps. About 8 weeks after that my Dr. recommended I stop taking it. It was about 8-10 weeks after stopping that I started to notice weakness in the right foot. Six months later I was diagnosed with ALS.

I'd like to remind all reading here they can share their experience on a forum and learn more about statin-induced injury with other statin-injured at the website of Dr. Duane Graveline, former US astronaut and USAF flight surgeon, himself recently diagnosed with ALS-like syndrome. Dr. Graveline discusses his diagnosis on his site.

www.spacedoc.net

I have been taking various statin medications, Vytorin (current), Zocor, Lipitor (in past) for about 9 years.

Lately, I have been noticing calf soreness, aches in the muscles around my elbows and my knees.

I saw an alternative health MD who gave me a CPK Test which was more than double what it should have been.

However, I have been told by me UW Lipid Specialist (UW Preventative Cardiologist) in the past when I've had high CPK tests that there is no need to worry about this until the CPK gets much over 1000.

My last CPK Test was near 500. Can you give me some idea as to whether or not I should be concerned?

I don't want to blame the statin for any muscle soreness that I get, but the new information I see on this is causing me some concern.

Until I heard your broadcast on kvcr, I didn't have a clue about why I was having muscle and joint pain. I've been on some type of generic cholesterol medicine for about 2yrs. Last week I had to go to my doctor about the pain, because my left hand had swollen up, and I was given a strong anti-inflammatory drug to try and control the problem. I have suspected something for awhile as I have had good health most of my years.

I began using Pravachol for borderline elavated cholesterol levels (because I am diabetic). After a couple of weeks, I began having severe pain in both legs, but much more pronounced in my right leg.
Coincidentally I also had a benign lipoma in my right calf. The doctors zeroed in on that, lacking any other reason for my symptoms which were rapidly growing worse: severe pain requiring medication, loss of coordination and speed in walking, loss of bladder control, spiraling downward until I required the use of a wheelchair to leave home.

I saw neurologists, orthopods, and finally a surgeon. Thank God he was an intelligent and an ethical one (Dr. Stocks of Raleigh, if I may!).

I remembered faintly hearing something about statins causing leg pain (a fact vehemently denied by all my docs)... and when I saw Dr. Stocks, he said in his opinion it would be very worthwhile to try stopping the Pravachol before contemplating surgery on the lipoma (because as a diabetic, the prognosis for a full recovery were not good).

Long story short, I did -- and all the distressing symptoms ceased within a couple of weeks.

I had thought my life as far as independence and walking, etc. was over at age 53, and the outlook was bleak. Then to learn that stopping the stain med could reverse all that... wow.

My husband Vincent had been using Lipitor for about eight years. About three years ago he felt a tightness around his head. He started developing a weakness in his legs and muscles and he felt as if "lights were passing by my eyes." To make a very long story short, after having every type of medical test, MRI, brain scans, cat scans, etc., Vincent has been diagnosed with Progressive Supranuclear Palsey,(PSP). This is a deteriating condition that mimics Parkinson Disease, only its worse.

He is experiencing continuous dizziness; it truly never abates. Also, stumbling, slurred speech, forgetfulness, less ability to concentrate, and loss of interest in everyday things.

He is deterioting in front of my eyes. PSP limits life to 6 to 8 years, with little to none medicines or treatment available at this time. We are part of a study group to hopefully come up with better medicines or treatment for this disease. I am convinced this is all due to the statin drug he was taking.

We had a wonderful life before this. I took Vincent off Lipitor about five months ago and am giving him a vitamin to reduce his cholesterol. His most recent blood work, (one month ago) showed his cholesterol and liver are just fine without the Lipitor. I confess, I did not tell his GP that I took him off the statin,

I wanted to see for myself how well the vitamin was working. I wish he never started taking this drug. I hope there will be a class action suit against the makers of these drugs who did not do enough research and are robbing us of quality of life.

My 67 year old father started taking Lipitor. About seven months later he gradually began to notice neck and shoulder muscle weakness and was eventually diagnosed with ALS. He died 18 months later. We have detailed medical records and would welcome any research.

I'm a 56 year-old female and began taking Lipitor approx. 3 years ago, and had no problems until one year ago. January of 2007 I began experiencing what I thought was a rotator cuff tear to my right shoulder, but hadn't done anything to injure it. I mentioned it to my doctor, and she gave me a pamphlet about "shoulder exercises" to do at home. I was also having trouble swallowing, and my doctor attributed it to my hypothyroidism. She had prescribed Lipitor for me, but at no time did she ever mention possible side effects.

My shoulder pain became much worse, and then my left shoulder began exhibiting the very same symptoms as my right shoulder. It was so bad that dressing and undressing would bring me to tears; the pain was that intense. Shortly thereafter, my arms from shoulder to elbow began to hurt tremendously, with stabbing pain and muscle spasms. I was taking my Lipitor at night before bed, and would wake up approx. 2 hours later, in excruciating pain. I could not sleep and could not get comfortable in bed, and generally didn't feel good anyway, so I was dead tired all the time.

Fortunately, I ran out of Lipitor before I could get my prescription filled, and I noticed right away when I stopped taking it that I was sleeping better and my arm pain (which by now was extending all the way down to my hands) was easing. Needless to say, I never again refilled my prescription for Lipitor. Have been off that stuff for almost 3 months now, and residual side effects are some lingering arm and shoulder pain, a slight hand tremor, a little mental fogginess and some trouble spelling where I never had any difficulty before.

There's not enough money in this world to get me to take a statin again.

Wonder how much Dr. Robert Jarvik got to shill for Lipitor??????

I am a 52, busy mom, and work part time. I had taken Lipitor(10-20mg) for several years. I did not get good results in lowering my lipids. I did however, get very ill from the Lipitor. Extreme fatigue, muscle pain, nerve pain, and a foggy brain. It was horrible.

I had many medical tests done on me and they all came back normal. Spent thousands on testing. I also was short of breath. It was a nightmare. I thought I might even die, I felt so bad.

Never did any of the doctors I had gone to, while knowing I was on this particular drug, tell me that I should change or get off of it. I did it on my own. I continue to become healthier, but my muscles are still not the same. A new physician has put me on niacitol and I am hoping it will improve my levels, I just started- so I am being hopeful.

I just came upon this Web sight looking for problems with generic drugs. I am on Zocor and am seriously considering telling my physician that I want to get off the drug. I have been experiencing leg pain and cramps in my lower legs and feet at night. I never had them before this past two months (the cramps). But I am not the person I was 5 years ago. I am tired with no ambition and that is not me. I am no spring chicken but have always had a lot of ambition.

I began on 10 mg. statins 7 years ago. After a year, the dose was increased to 20 mg. I felt tired and began to have leg cramps while doing water aerobics, not thinking much about it. After a year or less on this dosage, I began to feel generally weak and tired. Traveling, I was awakened with the worst thigh pain I ever experienced; falling to the floor, I could not move.

I began to read about the side effects of statins and was convinced this could not be the cause. This happened several more times, and I went off the med. because we were in the process of a big move to St. Louis.

My new Dr. put me back on the drug after a few months. I was on them for approx. 2 weeks, and I had the thigh and shin seizures one night worse than any. I stopped the statin immed.

Two days later, my palms and feet became very itchy... huge blisters began to appear on my hands and feet. These were so painful I could not walk or touch anything. I went to a dermatologist. He took a biopsy. He sent me to Washington U. clinic and Drs., pathologists etc. came thru. My dr. was going to put me on strong immu-suppresants but dragged his feet. The pathologists did not see something in the labs that pointed to a disease they thought I had.

I got better in about 6 weeks. Read small print on an ad on a statin and at the end, an added footnote said that it could cause bliseter-like skin eruptions. Took it to the Derm. Dr. He could hardly believe his eyes, and said I was lucky if that was it.

Haven't had any problems since. My internist eventually put me on Zetia, after a year, no problems. My recent blood work, I had raised liver enzymes... she took me off Zetia. Now I am concerned the statin and/or zetia may have caused damage. I will have repeats in 3 months, hopefully all will be back to normal.

I was 59 when my doctor prescribed Lipitor to lower my cholesterol, which had recently gone up to 212 from a customary 180. He took Lipitor himself and considered it very beneficial.

After taking it for about 6 months, I started experiencing leg tremors at night that were felt from the hips to the feet. I thought the house was vibrating. Although this sensation was most prevalent every night when laying in bed to sleep, it also occurred during the day occasionally.

I described my symptoms to a neurologist, neurosurgeon, general practioner, a sleep disorder physician's assistant and none of them knew what to make of my unexplainable, invisible and undetectable symptoms.

When a friend told me about a local person who died from liver disease that was believed to be a result of taking Lipitor, I stopped. It took about a year for my leg symptoms to diminish. But the tremor and internal intestinal vibration that I feel most often at night and first thing in the morning when awakening still occurs on a daily basis.

I have had numerous blood tests over the past two years that have revealed two problems: low levels of vitamin D and low red and white blood count. The low vitamin D level was treated with 12 weeks of 50,000 units per week. A hemotologist told me that there is nothing that can be done about the low blood count.

I have been off Lipitor now for two years but still have subtle leg and abdominal tremors that I've learned to tolerate because all the tests and doctors that I have talked to can't find an explanation or remedy. This bizarre leg - body vibration began after I started taking Lipitor. I believe there is a correlation.

I started taking 10 mg of zocor four years ago.
At that time I was in good physical condition.I would exercise regularly after work. Since that time I have aged rapidly and am not capable of working out due to pain in my back , right hip and leg.

I have been to a great number of doctors, and they have found no reason for the pain. I regularly get cortisone and nerve-burning treatments in my lower back.

I recently had my zocor prescription increased to 20 mg per day and almost immediatly my symptoms increased and went into my other hip and leg also. I have an appointment with my doctor scheduled, and now I am thinking the zocor could be the reason for all of my problems.

I will write again when and if I get some answers. I would like to thank everyone for all the helpful information I have read in these responses.
Thanks and God bless.

I had taken Crestor, Zocor and Zetia and they all made my neck ache badly. Then the doctor prescribed Pravachol. My chest started to hurt. I thought I had an upper respiratory infection so I continued to take the medicine. By the time I figured out it was the medicine, in addition to my chest hurting (which gave me an instant headache), I had shortness of breath and my joints were so weak I couldn't get out of the bathtub or climb stairs. I felt like an invalid. After I went off the meds I got stronger, but the chest pain, headache and shortness of breath have never gone away.

My doctor insisted there was no way it was caused by the meds. He put me on pain pills thinking that if I didn't hurt I would exercise more and get in better shape. Of course that didn't help. He sent me for a stress test to check my heart, that wasn't the problem. He sent me to a rheumatologist (??) who wanted to do the pain pill thing too, so I just didn't go back. He has really wasted a lot of my insurance company's money. He put me on Vytorin next and the chest pain, shortness of breath and headache continued, but no neck ache or worsening of my weak joints. When I went in for my colonoscopy I was telling my doc about it and he said breathing problems are a side effect and to try niaspan. I did and one important result: while I was on niaspan my shortness of breath got better. I had to get off of it because the flushing side effect was so painful. I'm currently back on vytorin. Within one day my chest pain, shortness of breath and headache were back with a vengence.

I called the doc and said I wanted off statins. That was about a month ago and his nurse calls about every 2 weeks to ask me a question so I know they haven't forgotten me. Once I tried controlling my cholesterol with diet and it went up to 300+.

My husband had an extremely severe reaction to Lipitor in 2001 after taking it only 15 days. The first 3 days he thought he had the flu, then he couldn't walk, he laid down for the next two years & was given only 3 weeks to live, but is finally recovering to some extent. He still has little feeling in his feet. He still requires a lot of rest & still has good & bad days. He lost about 150 pounds, his body canabilized his muscles, he bled through his skin (tags had to cut out of all clothing) & became anemic, he began to collect fluid on his abdomen, lost all body hair & his skin became similar to a 90 year old's (lifetime friends could not recognize him). His liver shut down & the drugs to get it going again shut down his kidneys. His electrolites were upside down. He initially couldn't keep food down--his life saver was watermelon! For months that's all he could eat but gradually started adding to his diet & improving. He had 3 total nightmare years, now it's looking forward to more improvement. However, the strong diuretics can possibly be fatal, so one more obsticle.

My husband has always lived in the same city & knew it inside & out. After Lipitor he would scream in fear that I had turned a wrong direction. He could not remember which direction our own home was. After he began to recover I lived in fear that he would drive away & not be able to remember how to get back home again.

He has had to endure so much because of 15 pills. His life I'm sure will never be completly what it was before Lipitor. There were so many numbing circumstances. I'm sure I've forgotten as many as I've remembered to list. No one should have to go through this.

In my opinion, Lipitor should be required to test patients for reactions BEFORE given the drug. These are not side effects, they are life-changing. Just in our own small neighborhood we have had many nightmare stories. This needs to stop.

My father was diagnosed with ALS in December of 2005. He was on statins for 16 years (I know it was Lipitor for several years, possibly the entire 16 yrs. but haven't had the chance to confirm this with him). The tremors began in his left arm and he has since lost his ability to move any of his extremities, and actually had surgery this week for a feeding tube (PEG) which was unsuccessful because the dr's were unable to locate his stomach. (His diaphragm muscle has become so weak that it is causing his organs to move up into his thoracic cavity.)

I began the ALS - statin link research last week and every day I have been even more nauseated and extremely angry at what I am finding. I could accept this when it was "God's will," but this is MURDER!!!! You cannot convince me that all of this is coincidental! They say that ALS cannot be caused by statins because not all ALS patients were taking statins. A lot of prescription medications have similar ingredients, some of which are the same ingredients used in chemical warfare. Yes, I said chemical warfare. I cannot believe there has not been more effort put into comparing any and all prescriptions ALS patients were taking. There has got to be a link somewhere and we have to find it.

Another area of concern is the number of diseases like ALS and PLS, etc. that all have similar symptoms. To me, it resembles what the pharmaceutical companies do with their clinical trial results. In order to make their drugs seem safer to the public, the reports of side effects are split up into several different descriptions and then the percentage is split between the names, thus causing the percentage of each side effect seem minimal. For example, amnesia (drug-induced effect) could be split up into confusion, memory loss, senility, and cognitive impairment. Pretty tricky, huh! What's to convince me this couldn't be done with neuromuscular diseases, as well.

Please, we must all do something. We have all seen what relying on the FDA will do for us... nothing! It is up to the consumers, the ones suffering, to educate the public.

After starting Pravachol at age 48, I experienced muscle pain in my legs, but did not pay much attention. Within a year I had fallen on my face three times for no obvious reason. I was diagnosed with FSH Dystrophy, a form of Muscular Dystrophy. I now have to use a walker or scooter to go any distance. I have also lost the ability to raise my arms to even shoulder height and experience pain and fatigue.

I believe the statin greatly accelerated this disease. I reported this to my MDA neurologist at The University of Texas Southwestern Medical Center, and she did not give it much credence. In hindsight, I now recognize the non-debilitating symptoms of FSHD that I had for years.

Zetia has been effective in lowering my cholesterol, but with the recent study that questions its effectiveness, my Dr. wants me to try a different statin.

I am opting to try herbal supplements instead. Frankly, the prospect of faster muscle deterioration is about as frightening as a heart attack or stroke.

Thank you for gathering this information.

My mother took statins for years. She died two years ago (diagnosed with CBD). I always wondered if statins played a part. So much more to say. MSL

Was put on lipitor after quadruple bypass. Before leaving the hospital, I told my surgeon I didn't want to take lipitor. He said, take it for two months and quit, but don't tell anyone I told you to. My wife had a fit and said I had to take it. Within the next two months, my leg muscels became really weak.

I finally quit and my legs immediately got better, but took a couple of years before being close to normal. When I went to therapy before leaving the hospital, the therapist told me about six times, now you have to take the lipitor. Sounds like they are getting a cut from the drug companies. I also developed a numbness in my legs. I now have found out that it is P.A.D. Someone should sue those drug companies.

I took Simvastatin, 20 MG for 19 days beginning 10/18/07. My leg pain became unbearable, and I stopped immediately. The pain has not abated. I do have osteoarthritis and require two total knee replacements. This pain is totally different and includes the entire leg, some "fanny" pain, and I have weakness throughout my entire body. I went from 90 minutes of exercising to difficulty standing, walking, moving, and even sleeping. Pain meds, ice, and heat do not help. I am desperate. Where do I go from here? How long can this last, and what tests could aide in a diagnosis and treatment plan? Thank you.
Karen S. Burns

I have been taking Lipitor since 2004 when I had 2 bypass ops and 3 Med. stents put in. About 16 months ago the muscles on the inside of my legs got so painful that I could hardly get up or sit down. I thought I would be in a wheelchair soon.

When I went to my cardiologist for my yearly check-up, I told him about it and he told me to take Coenzyme Q10 100mg per day, which is an over the counter supplement available in drug stores or health food stores. I took it for 3 weeks and nothing happened, and then over a period of 4 days the pain tapered off to nothing. It was like a miracle, and the pain has never come back. I hope this can be of help to others as it was to me. Thanks.

About 7 years ago, I was put on both Pravachol and then Lipitor. Muscle spasms and stumbling followed but was told not to worry about the medications. I was diagnosed with ALS 5 years ago and am completely paralyzed. Of course I stopped the medication before I was diagnosed and truly believe there is a link.

My husband has taken Zocor since 2001. He was 48 at the time. He started on a dosage of 10 mg. and continued that until September 2006. At that time his dosage was increased to 40 mg. and in December 2006 it was increased to 80 mg.

Before September 2006, he developed numbness in his feet, trouble writing, and became quieter in group situations. He believed that his mind wasn't what it used to be. When put to a real test, you could see that his strength was waning. I excused this as growing older, but he was just in his early fifties.

Obvious problems started showing up in January 2007. Now it's February 2008 and he's 55.

He can't communicate with customers in the business he started 30 years ago. Neuropsychological testing revealed he'd experienced a 20 point drop in IQ, that his cognitive agility/flexibility is significantly impaired, that his sequential reasoning/problem solving skills are moderately impaired, that his manual motor speed in his right hand is significantly impaired. His writing can't be read even when he tries his best to print. He has trouble walking. He loses his balance easily. It is very difficult for him to get up when he falls. He has very little body strength. He can't walk up stairs. He has no feeling in the bottom of his toes. He has trouble expressing thoughts. He began a halting speech pattern in May 2007. His speech became slurred in September 2007. (It's better now). He has a lot of trouble sleeping.

He's made numerous trips to his internist and a neurologist. Testing has only revealed findings significant with neuropathy. Per their recommendation, we have an appointment set up with a dementia psychiatrist. I feel I need to look elsewhere for help--but I don't know where to go. I could use suggestions.

I was put on the generic altoprev in Fall 2004. By the following spring I had such muscle soreness and stiffness that I could barely function. I was sent to physical therapy, but just the gentlest of therapy caused massive tendinitis of my shoulder. Not good for an active professional musician. It finally occurred to me to try taking myself off the statin. Miraculous recovery.

But a different internist convinced me in 2006 to try Zocor because of my high LDL and triglycerides. This time it took only 4 weeks. My hands became so weak I couldn't practice my instrument for more than five minutes. My previously healed shoulder tendinitis activated again. I immediately took myself off the statin. Again a miraculous recovery--except now I have chronic muscle stiffness, pain, etc., that won't go away. The worst is the constant tingling feeling in virtually every muscle in my body.

I didn't bother to tell my doctor when I stopped the statin, which made him angry when I told him at my physical months later. He had my blood checked for whatever marker shows a statin problem, but the marker wasn't there (maybe because it had been 4 months since I took the stuff). That's when he basically told me I was crazy. I walked out.

Female, 75, on statins for 8 years. Gradually lost ability to do all the things I loved. Hiking, swimming, gardening, cooking. Cannot now walk more than 20 paces without stopping to rest. Was put on oxygen, 2 liters, 24/7. Then, lost ability to do the necessary housework due to constant fatigue. For last 4 months, have had neck, shoulder and back pain, Now am having muscular wasting and loss of function in arms, hands and legs. Developed GERD. I have CHF, Atrial fibrillation, and COPD. Am removing myself from simvastatin. My cholesterol is only 139. I only hope it is not too late to regain some of my former vitality.

Lipitor. I used it for 2 days and at the end of the second day I had terrible pain and stiffness in both legs that made it very difficult to get up my stairs. I discontinued it immediately.

I have been on Simvistatin for several years and am now experiencing terrible numbness in my feet, sometimes up to my ankles. I have had legs cramps and have also had trouble sleeping. My primary physician sent me to a neuorologist for the symptoms. An EMG was done with few results. Now I am wondering if the symptoms are from the statins I have been on for years. I have also had carpul tunnel in both hands. I am discontinuing the medicine as of today and will monitor myself.

I started taking Lipitor approximately 5 years ago. As soon as I started taking it I experienced pain in my joints and it was just an effort to walk. I am a 47-year old male, and when I complained to my physician, his recommendation was to try Vytorin.

I have not had any side effects physically such as muscle pain, joint pain, etc., but with the Vytorin I do have such things as memory loss and problems with my eyesight. You might chalk that up to old age but it seems I never had problems with my eyesight, memory problems until the last few years. Is it old age or can it be linked to the statins?

I have discontinued taking Vytorin and I think I will start taking some natural supplements such as red rice and flax seed oil. I will see if these natural supplements will lower my cholestrol because the apparent side effects of the statins are starting to scare me.

My doctor has also put me on statins three times and I get very sick. Muscle weeknesss, joint pain and extremely tired all the time. He keeps telling me to stay on the drugs and my blood tests are normal. I stopped taking them and within weeks I feel better. I don't understand why doctors don't listen and keep pushing these drugs which are harmful to some people.

I started taking Lipitor in 2001. By 2003 I was having seizures, painful 24-7 headaches, muscle aches, severe pain, bladder problems, pancreatitis, muscle wasting, dark urine, couldn't walk, weak, depressed, frailing of limbs, light streaking in vision, double vision, constant biting tongue and inside cheek, and many other symptoms.

I quit taking it in March of 2003. Now in 2008 I am in constant pain in the forehead, back of head, down neck, shoulders, and there is nerve damage in my feet and hands. I still have more headaches than not. I have been told I have fibromyalgia and chronic fatigue. I see an arthritis specialist. I spend more time down than up. Some things have improved but I remain sick, very sick. I run low grade fevers and get chronic sore throats. I have Botox injections around my neck. For three weeks I am a mess and then it starts improving. I am on a Fentanyl patch, Neurontin and Vicodin, Trazodone and several other meds. That helps but the best medicine is having something valid, verification for how I feel. I was told it was all mental for the two years I took Lipitor because Neurologists could not find anything wrong. And the physicians still refuse to label my illness correctly. Finding a physician who understands would be wonderful. My husband says nobody knows unless they live through it with me. I hurt every minute of every day. I am so sick.

My mother had the same reaction within two months. She took it after me so we new what the problem was. Please let me know if there is a physician in the Seattle area that could help me out. Thank you.

I've been on statin drugs now for 12 years. I took Pravachol for 8 years and was taken off after that time because my doctor felt I had plateaued. He then put me on Vytorin 10/40 and my cholesterol has been very good, around 140. When I was on Pravachol my cholesterol level was always just a little above the 200 level. I could never get it below the 200.

I can remember some years back when on the Pravachol, I started to develop skin eruptions on my face which never got better, and I always had to put some type of oily cream on it to keep it from getting crusty. Now, just recently I've developed another one above my eyebrow. I've been off the Vytorin medication now for about a month and can see that the eruptions I had on my face are starting to disappear. Although it's not gone completely, I can see and tell that the statin medication had something to do with it. So, with that I plan to stay off the medications until I return to see my doctor in 4 months.

I was on Lipitor for maybe 8 months and developed muscle weaknes to the extent that I was exhausted by noon each day. Then came the plantar faciatis, and I almost cried when walking. And I got such painful leg cramps when in bed anytime I stretched at all. And there were pulled muscles everwhere anytime I reached. My wife said I lost memory and insisted I stop Lipitor right away.

It took 8 months or more to recover to where I can walk comfortably. Bad stuff, I don't believe that it is a low % that have these issues. My doctor wanted me to continue, and I found a new guy.

I have been on Lipitor for approximately 8 years. Currently taking 80 mg. My memory has been taking a downhill slide fo the last few years. Not sure if Lipitor is the culprit, but from what I'm reading it sure looks like it milght be. How can I be sure? I am 80 years old and otherwise in pretty fair health.

I've been having a terrible problem with achilles tendon, left foot. Followed doctors advice, did everything. Now it's happening to the right foot. I truly believe it's the Crestor. I didn't do well with Liptor, muscle pain after 14 pills. I am not taking this medicine anymore. Nor will I take another statin again. I thought it had something to do with the fact that I am a diabetic, but I'm convinced it's the Crestor. I thought I did well with my diet, my cholestrol went down 41%. So it was diet related. I will have to do the diet again. I don't like the discomofort in my feet. I bowled three to four times a week, now I do nothing. Hopefully, I will be able to return to bowling. Wish the doctors would listen to the patients when we say we don't want these drugs. I think the FDA is doing a poor job of policing these drug companies.

My husband took Lipitor for about 2 years. He complained of cramps and muscle weakness. His doctor didn't believe it was from taking the Lipitor. My husband stopped taking it himself. He then ended up with drop foot and we went to see 9 doctors in the following year. He told each of them that his problems all started with taking the Lipitor. His diagnosis from a neurologist was that he thought he had ALS. I also believe Lipitor caused his death in 2006 at the age of 57. As far as I am concerned, if Lipitor causes one person to get ALS or any other type of neurogenerative disease, it should not be given to anyone!

I have been a LPN for many years and it still amazes me that people will do and take whatever the doctor tells them regardless of the suffering they go through with unproven medications.

I have worked with many doctors that never read any studies. They prescribe whatever the last tall leggy blonde pharmaceutical rep plops down on their desk and spouts how wonderful it was for all ills and pains.
All the off-labeling prescriptions are done without the least type of study, most are word of mouth.

One example is Megace. It is given for breast cancer, but doctors routinely prescribe it to the elderly who are not eating well as it "improves the appetite", discounting the complaints of tenderness in breast tissue, abnormal blood work, or the fact it builds fat not muscle.

I am 69 years old and have had cholesterol levels of 250 for a decade. I resisted Dr's efforts to put me on a statin until a year ago, when I started on simvastatin. 9 months later I was hospitalized with Trans Global Amnesia. In addition I have bilateral neuropathy of my feet and legs. My leg muscles are painful and at times edematous. Recently I developed a renal cell carcinoma, which was removed. I happened onto the spacedoc website while surfing the web. Needless to say I have stopped taking statins in spite of the dire warnings of my Dr.'s about my cholesterol level.

I've tried so many statins and statin-types. I am not a high-fat eater, but the doctors insist I take the meds because of added risk of possible genetic heart problems. All of them caused such muscle weakness, pain, fatigue, memory loss, numbness in toes, etc that I decided (after much prayer and discussion with my husband) to get off all of them. Yes, the meds may lessen my chances of heart attack, but at what cost when I can't function from day to day?

I just happened across your website while researching another topic. I started taking red yeast rice about 2 yrs. ago for a very slightly elevated total cholesterol. I was only taking half the recommended dose.

Within about 5-6 mos. I started experiencing numbness and tingling in my legs - initially L side only with some L arm involvement as well. After the initial nurse panic thinking CVA and other worst case scenarios, I calmed down and thought about the possibilities. Because it was the only new supplement(everything else is vitamins) I was taking I stopped it and the symptoms stopped, started it again and the symptoms resumed almost immediately.

There was information about statins in red yeast rice not long ago and I believe it was that they were being added to the red yeast rice (beyond the "natural" occurence of them). Careful diet and exercise will be it from now on in light of these reported experiences - I'm a believer and ever so glad to know I'm not crazy!

My husband has very serious muscular and nerve side effects when he tries to take statin drugs. His doctor seems to be under pressure to prescribe statins because he has tried him on everyone of them and he always has the same serious side effects and yet he keeps right on trying them. His legs become very weak and then he aches all over like a really bad case of the flu. He can't remember things from one minute to the next.

All of his relatives who have tried statins have had this same reaction. They were put on high doses of Niaspan and that worked well in bringing down the cholesterol levels. My husband Jim's doctor put him on 1000 mg./day of Niaspan and it seemed to be working but his most recent blood test showed his cholesterol had gone back over 200 so his doctor told him he had to take Vytorin and he told him that although it contained Zocor, which he had tried and couldn't take, he told Jim that there was an ingredient in it that counteracted the muscular side effects and if he didn't take it he would die. That is not true. The only other ingredient is Zedia which recent studies have shown to be useless for heart disease.

My husband was diagnosed with heart failure in 2003 although he had no risk factors at all -- no high blood pressure, no high cholesterol, no blockage in any veins or arteries and he is thin and seemingly healthy. However, his heart was enlarged and functioning at 10%. By staying on his prescribed medications he brought that up to 55% and 60% is normal. When it reached that level last year, he was taken off many of the medications he was taking. Recently he has had high blood pressure and cholesterol and a month ago had chest pains. He went to the hospital then and they found 20% blockage but was told that isn't serious. Yet his doctor fears looking bad on his audit if Jim is not taking statins. Jim told his doctor about his relatives who take high doses of Niaspan (4,000 - 6,000 per day) but his doctor said that might damage his stomach, liver, and kidneys. He wouldn't even go for trying 1500 mg.

He is between a rock and a hard place now and I just do not think the drug companies are being honest with doctors. My husband and I do not want to run the risk of his getting Lou Gehrig's disease and dying from that.

My 47 year old brother in law was diagnosed with ALS two years after having started on a Lipitor prescription. The disease has progressed steadily in the 18 months since diagnosis.

I have been on Vytorin for 21 months. I stopped taking it because I have developed a full body numbness which was subtle at first but has gotten worse. I told my diabetes doctor. He said to go to a neurologist. I am scared as I have been off these drugs for over 2 months and it is not better.

I am 51 year old female who has been on Vytorin for almost 2 years. It did a good job of bringing down my cholesterol but I just haven't felt well.

I have a lot of pain in my feet and leg weakness and fatigue and depression. I really had not related it to the Vytorin but when the reports came out a few months ago about it not being effective and possibly even harmful I stopped taking it for about a month until I could see my doctor and talk to him about it. He wanted me to get back on it and so I did.

After about a month I noticed how bad I felt and realized that I had felt better during the time I was off it. Now I am going to stop it again and really notice if it makes a difference. In the meantime I will try some more natural methods and see how my numbers are with my next check up.

I took Lipitor for only a short time when I had terrible - terrible pains in my leg during the night that cramped them so much it was unbearable. It happened ONCE and I stopped taking them. Went to the doctor and he put me on Zocor. I took that for a couple years with only occasional mild cramping till last fall when I began having intense cramping on the inside of my thighs, near the groin area almost every night. I went off the Zocor and didn't immediately go back to the doctor.

I realized within a couple weeks that I could think much clearer than before. I had not realized that I was so foggy in my thinking. I had been having a terrible time at work as I was supposed to be learning computer programming. What a difference without the Zocor!

Now, my doctor wants me back on a statin. I am experimenting with Red Yeast Rice with CoQ10... I'm almost scared that the cramping or fogginess will return. Sure hope not! Need something for cholesterol... but what?

I started taking statins about two years ago. First my doctor gave me Lipitor which caused muscle pains and weakness that I could not understand. Zocor was the same. About a year ago I was given Advacor which also is causing me to have the same side effects.

With all of these medications I just feel tired all of the time. I am 33 years old and never had anything like this before I started taking these drugs.

I stopped taking the Lipitor myself and the symptoms went away in a couple of weeks. I did the same thing with the Zocor and had the same results. Now I have been advised to stop the Advacor because of elevated CPK levels. These levels started out at 150 before I took any of these medications, now they are nearly 1200.

I got my last blood test results from a fill in doctor while mine was on vacation and he said to stop the medication immediately. I saw my doctor today and he would like to keep trying the path we are on.

I think that I am going to go down the natural path, and let him go his own way. If there is any information anyone can give me about this please let me know. I have a family history of heart problems and realize that I need to monitor my cholesterol and trigliceride levels; however, I am not willing to go through life miserable to do this. There has to be a safer alternative to statins. My doctor would not even entertain my suggestions of a natural approach. Any information would be much appreciated.

MY MOTHER WAS DIAGNOSED WITH ALS IN 2007. SHE HAD BEEN ON CHOLESTEROL PILLS FOR YEARS.

AFTER SURGERY SHE STARTED TO DEVELOP SYSTEMS. SPEECH, SWALLOWING, TALKING, AND EATING. AFTER ALL THESE TESTS, THE CONCLUSION WAS ALS.

WHAT A HORRIFIC DISEASE FOR ANYONE TO GO THROUGH. MY FAMILY AND I ARE CONVINCED IT WAS THE PILLS. OTHER PEOPLE I HAVE HEARD OF WITH ALS ARE ALL ON CHOLESTROL PILLS.

THERE IS NO WAY ANYBODY ELSE IN THIS FAMILY WILL EVER TAKE ANY TYPE OF THESE PILLS. MY HUSBAND TAKES FLAX SEED FOR HIS BLOOD PRESSURE AND CHOL.I WISH THERE WAS A CURE OF THIS AWFUL DISEASE. MY MOTHER SUFFERED SO.

Started taking simvastatin (generic Zocor), and within days I felt edgy and irritable. I have panic disorder (have had since I was 18 years old), so I take Zoloft and Klonopin. At first I thought it was a problem with my panic meds, but within a day or two after stopping simvastatin, I felt better.

My doctor tried pravastatin (Pravachol), which is supposed to have fewer CNS-type effects. It did, but within a month to 6 weeks, I became edgy very easily at work with any stress at all. Because the pravastatin had been fine for more than a month, I thought again that maybe it was the panic meds (they do need adjusting occasionally)--however, once again, within a couple of days after stopping pravastatin, I felt much, much better.

My cholesterol had been up to 300, and through diet and exercise alone I brought it down to 250--that's almost a 20% drop, as good as any of the statins. That was 4 months ago, and I've been exercising even more. Doctors should actively admonish patients to lose weight, eat a better diet, and exercise before reaching for the statins.

I was diagnosed with a peripheral neuropathy as a young teen. By age 23 the symptoms had mostly disappeared. At age 38 (after taking Lipitor for 2 years) the peripheral neuropathy was back with a vengeance. Stopped taking the Lipitor (neurologist thrilled that 2 years later I am almost back to where I was) the general practitioner keeps blasting me for not going back on Lipitor or some other statin drug to lower cholesterol. Every cholesterol drug I have seen lists muscle weakness and neuralgia as a side effect .... ummmmmmm NO THANK YOU !!! How many other people have to get sick before they do something about the cholesterol drugs?

My died from ALS in January, 2008. She was the healthiest person, always took care of herself. Her cholesteral levels weren't terrible, but her dr put her on lipitor, for over 10 years. She was a tiny woman, I believe that her ALS was triggered by statins. It's a horrible thing.. she should be here now

i think that dr's are too concerned with cholestral levels. I was in italy, and many of the old people have 300 and 400 levels, and they live to well over 100. The key is, their body is fine with those levels. Whoever came up with this 200 thing.. statins poison the body.

42 yr male. Been on Liptor for 8 years due to family history. Started on 20mg but after yr 3 had lots of muscle and joint pain in knees and elbows. Went to 10mg and was fine for another 4 yrs. Year 7 had lots of muscle/joint pain all over and ultimately popped all ligaments in right knee doing nothing more than walking up stairs. Also noticed short term memory starting to go.

GP Dr said Lipitor had nothing to do with it but I called BS. I insisted I go off lipitor for 3 months and behold the pain eased a lot (within a week) and am able to walk mostly normal again - still cannot run and have no strength in knee. 6 months later I am back on Lipitor 10mg 3 days week but plan to be off completely in a year (changing diet with regular Cholesterol monitoring) since I am convinced it is causing problems.

Stay off statins if you can help it since the drug companies and the FDA are obviously not telling the whole truth.

I took the survey yesterday. I read your report on the ALS like syndrome, and I have to say that I am almost ready to cry, because I really thought, as some co-workers have stated, that I was losing my marbles. Now I KNOW why I am experiencing all these odd symptoms just like described in your article. I stopped taking the Simvastatin two night ago, and while I don't yet feel much better, I am relatively confident that I will a few weeks down the road (it took me two - three weeks to start feeling crappy in the beginning last year).

Thanks so much!!!

I have been taking Lovastatin for about 8 months . I have had increased weakness,muscle aches, and then severe pain in my lower back and shoulder, and memory loss, I just stopped taking it three days ago without the doctors knowledge and feeling better already.

I was diagnosed with high cholesterol and put on Crestor. At the follow up I was put on some arthritis drug to help with the sudden joint pain. I told the Dr I felt like I was 80. I was late 30's, very active and healthy. Biking, hiking and walking.

Regardless, before my prescription ran out I was miserable with severe muscle pain in my joints, legs, arms and a severe hip pain that required shots. I couldn't get my prescription filled right away after it expired and while I waited I started to feel better with each passing day. I called the Dr and left a message never heard back from them until two weeks later when I called for my medical records so I could go somewhere else. They were shocked that I didn't want to return to their care.

Eventually I went to another Dr and I explained to him no statins because my last experience was so bad. He convinced me to take Vytorin. I used it and didn't even see the train coming. My vision got bad, my memory was shot, I couldn't speak without being laughed at because I sounded like a mental case (stark contrast and they thought I was joking).

I developed a severe rash on my feet, groin, arm pits and chest. A specialist checked me for an STD and gave me a cream. I couldn't even remember the name of the statin drug I was on to tell him. It didn't matter he wasn't concerned with that. They did want to know if I was paying with plastic and they didn't take Discover.

When my Vytorin prescription expired I forgot to refill in time and the Dr screwed up the refill to the pharmacy. I distinctly told them not to worry about the thyroid prescription because it had 11 refills left so they renewed that one anyway and failed to renew the Vytorin. I started to feel better. Duh! So I read up about the side effects of Vytorin and was not surprised to learn that my body is still intolerant of statin drugs no matter what the name of it is.

My advice with any drug is to tell a close friend what is going on and have them watch you for changes that are abnormal with you. If you have problems with one statin drug then changing the name of that statin drug will not likely change the effects of that drug in your body. To elaborate, alcohol is a drug and has the same effect no matter who bottles it.

Good luck,
Mike H

In my opinion, the FDA has dropped the ball on the ALS-statin link and most doctors have never even picked it up...

I've posted here before, when my mom died from Lou Gehrig's disease after briefly taking Crestor. I was in contact with the FDA, provided them all Mom's medical facts, was told they were "studying" the situation...haven't heard from them in months.

I don't care what anyone says: statins are the worst thing to ever come down the medical pike. Be it two weeks, two years, or ten, people are discovering that the price to pay for low cholesterol is debilitation and/or death...

High cholesterol runs in our family; mine is high. However, I've lowered it by 30 points by eating oats. A simple natural grain that - at its worst - gives me gas.

Well, after watching my Mom cry in helpless desperation as she withered away to a paralyzed shell of her former self and then for her to die the most horrendous, the saddest, the cruelest of deaths from ALS simply to achieve an "acceptable" cholesterol level, I'll take "burping" any day...

Bottom line: Shame, shame, shame on the medical community for pushing these lethal pills all for the sake of a buck...more shame to those that continue to promote them...and to hell with all of them when the thousands of wrongful-death lawsuits come crawling out of the woodwork.

I had a statin-induced myopathy with Lipitor or atorvostatin. First, I had mild muscle cramps at night, but I became acutely worse (leg muscle weakness so severe I could not walk) a few days after starting Toprol or metoprolol. Toprol is a weak mitochondrial NADH-oxidase inhibitor, and this enzyme also is Coenzyme Q10 dependent. Coenzyme Q10 synthesis is decreased by statins, so I have postulated that there may be an adverse interaction between statins and Toprol or metoprolol in patients prone to stain induced myopathy. Has anyone else experience myopathy with this combination?

My husband was started on Liptor in January for his high cholesterol. To complicate matters, he has Ankylosing Spondylitis. Since January he has had increased pain, Left arm and leg weakness, and is losing the ability to walk. His Rheumatologist sent him to an orthopedic surgeon due to a myleogram which showed significant disc degeneration and to see if surgery was indicated. The surgeon thinks he has ALS and has referred him to a Neurologist. After reading this article, I think the increase weakness and muscle atrophy is due to the Lipitor. We plan to talk to his doctor today.

Wow! I happened across this site as a result of Googling my symptoms of muscle weakness/cramps and use of Zocor for the past 2 years. Over the past few months, I have developed muscle weakness in my legs, shoulders, and arms. I've also recently had occasional problems with chewing and speaking as my tongue fatigues quickly.

I have problems with leg and foot cramps, particularly at night, with "weird" cramps such as my toes bending backwards, or my third toe cramping and the rest of the foot being cramp free. I have gotten to the point that my strength and endurance are about a third of what they were a year ago.

I mentioned this to my doctor and asked him about any possi ble connection and he just shrugged his shoulders. I quit taking the Zocor about 2 weeks ago and will see if my symptoms diminish.


I had a stent put in February of 2005, and was put on Lipitor. Almost immediately, my hips and legs cramped to the point I could hardly walk. Being aware of possible side effects of Lipitor, I did the body scan and MRI thing and nothing was found. I told my doctor I would not take Lipitor anymore as I felt the problem was due to Lipitor and muscle damage. To this day, my legs cramp when I get up from a chair and/or the bed.

I had a family member who had no muscular or neurological symptoms prior to taking statins (first Baycol, then Lipitor). She first developed myalgia in her legs, then peripheral neuropathy, then drop-foot, and subsequently she was diagnosed with ALS and passed away. The timing of the symptoms coinciding with the statins are very suspect.

I have had all the symptoms. My family physician says there is nothing wrong. Three yrs. ago I joined a Crestor study for helping high C-reactive protein. Within two months of taking 40 mg. of Crestor, I got all the symptoms including blood in urine. I stopped but after 3 yrs. have not been able to get strength back in legs.
Is there any hope? Steroids? IVIG Immunglobin Lobutin Infusions? (whatever they are?) I'm willing to try anything. Maybe that's how I got involved in the first place.

Any suggestions?

I was diagnosed with high cholesterol almost two years ago. I didn't want to mess with prescription drugs, so I asked an herbalist friend what she recommended. She told me to take red yeast rice, which I started, and lowered my cholesterol 100 points. I know it is a statin derivative, but it seems less destructive in the natural state. I have had no problems with muscle weakness/pain. Has anyone else had success with this herb?

I am a 51 years old and began taking Zocor 3 months ago. I happened to also be taking COQ10 100mg and unfortunately this did not help me at all. Using Zocor, my cholesterol quickly went down the first month from 270 to 150, and the doctor says now that proved that for me this was a strong drug to take.

I am experiencing severe pains in my knees, lower legs, back, off & on, in my arms and neck. As I write this email my hands are swollen and somewhat numb. I was always energetic, and exercised regularly, but now I easily fatigue and feel rather depressed.

I got off of Zocor just a week ago. I had blood tests done for rheumatoid arthritis, lupus, & lyme to rule them out. They all came back negative. My doctor thankfully is not in denial and now believes that this was due to the cholesterol medication. I am hoping that I will recover from this and not become another victim with irreversible damage. Does anyone know of any supplements that can help heal these symptoms?

My father-in-law was a strong man who enjoyed his retirement and golfed often. He also took a cholesterol medication a few years back for a short time. He was diagnosed with a lateral form of ALS and lost use of his legs. He now attributes this to using a statin drug.

In Jan. of 2007 I was put on Lovastatin (Mevacor) with no advice to watch for side effects. I developed strong hip and thigh muscle pain and upon returning to the Dr. 6 weeks later mentioned it in passing, never connecting it to the medication. She took me off the med.

15 months later I still have the pain and weakness in my legs. It never changes no matter activity or none.
There is a study going on at UCSD about the side-effects of statins. They feel they should never be given to older women and in general may open the door to many illnesses. They also say the pain may or MAY NOT go away after the drug is stopped.

While my experience with Lipitor is not as dramatic as the ones that I read on this site, I sincerely believe that is because I did not take the medication very long. I have high cholesterol and I took it for 6 months after my physician prescribed it. I started feeling over all weak and generalized hurting in all of my muscles and joints.

My doctor said that the medicine could not possibly be the cause and after I had been off of it for about 8 months asked that I try it again. I took it again for about 2 months, and I felt so bad that I stopped. This year again after my physical and lab work, my physician prescribed Lipitor, but I have refused.
I strongly feel that there are strong side effects that make life debilitating and need to be investigated.
Thank you.

Several years ago, after bypass surgery; I was put on Pravachol and had very bad muscle pains and was very tired. The doc changed my meds to Lipitor, and my skin broke out terribly. The rash was the same on each side of my body. I went to my dermatologist and the first thing he asked when he saw it was, are you on Lipitor? He said that a lot of his business came from Lipitor use. This has been about 10 years ago and I still suffer with terrible skin problems. I will never take a statin again.

My Dr. found a noise in my carotid artery, and I subsequently had a stent put in. That was successful, and I felt wonderful. Thinking cleared up and I had more energy. However, I was put on Lipitor after the procedure, and within 2 months, I experienced adverse symptoms. Those included blurry vision, muscle aches and pains (all over) joint aches, and "fuzzy thinking," memory problems, to name a few.

I immediately went off the Lipitor and within a week felt like my old self. I was then put on 5 mg of Crestor and within 2 weeks began to experience the symptoms all over again, so am going off the Crestor. I would sooner take my chances of dying of a heart attack or stroke than have the quality of my life compromised this way. If I had stayed on this medication for much longer I would have been in real trouble. LWR

I had been taking Simvastatin for 6mos when I noticed knee joint pain that was debilitating enough to prevent me from functioning on a daily basis effectively. On a lark I took 1 pill 1000mg of Milk thistle and within 24hrs 95% of all my joint pain has subsided. I now take 175mg milk thistle to mainatain that level in my blood, and it has been effective now for two weeks, ongoing. Milk Thistle is good for the liver rejuvination as well as the kidneys. I recommend this herb for anyone who has arthritis, as well as those taking statin drugs.

I took Lovastatin for about 4 months, stopped using it because of muscle problems in legs. My doctor prescribed another medication last year with two medicines (I forgot the name), and the same thing happened within two months. I no longer take, nor will I take, statins of any kind.

I have taken three different statins. The first one (prosalac I belive it was spelled) no longer worked after five plus years. I switched to the #1 statin, Lipitor, which my body rebelled against. I found it hard to take, with aches and stomach problems. The third one, Zocor, I am still taking, but I find myself very forgetful on names, tasks, and how to perform many tasks. I now take fish oil with 10 mg of Zocor. Still the same problem with memory but the cholesterol number is good in my eyes but not my doctor's.

He has learned that I decide what I want to do. I am a healthy 65 year old who is considering dropping the statin, Zocor--just as I have dropped two doctors recently for other male problems.

My husband started on Lovastatin in 2006. He started to notice weakness in his right arm. This weakness progressed to the point that he saw his MD in June 2007 thinking he had a pinched nerve. After a couple of MRI's which did not show a pinched nerve, he was referred to a neurologist who gave him a diagnosis of "possible ALS".

In August 2007 on his 60th birthday, a second opinion confirmed the diagnosis of ALS. Since that time, my husband has progressed from weakness in his right arm to complete loss of function in his arms, very weak leg muscles and difficulty breathing. The doctors are now encouraging us to enter him into hospice care. All this in only 10 months. We are still in a state of shock!

What really bothers us is that his cholesterol was not that high - 239. Since then, we have been informed that niacin and diet could have brought the count down before the statin drugs should have been prescribed. The ALS specialist that we saw told our daughter that she should never, ever take a statin drug. Something needs to be done about taking these drugs off the market.

I have taken statins for years, and when the dosage was increased I realized it was the source of my slow recollections and general fog. I began taking co-Q10 in the form of Q-absorb 100% natural enhanced absorption 30 mg. A few weeks later I experienced about 10 hours of Global Transient Amnesia. I have now stopped taking both. I feel better but will be starting on Zetia soon.

Be careful that the cure is not worse than the problem. I have read about co-Q10 in terms of micrograms. I think this dosage was too much.

I have been taking statins for close to 20 years following a mammary bypass in 1988. I took Lipitor, and in the last year changed to Crestor when my health care plan took Lipitor off its approved drug list. I experienced joint pain for most of those 20 years, but did not attribute it to the statins. I was put on pain relievers, Bextra being the most effective, and when Bextra was taken off the market, I was put on Plaquenil for the joint pain, along with Voltaren twice a day. Because the Voltaren can cause stomach irritation, I was advised to take Prilosed OTC twice a day.

A recent cholesterol test indicated elevated LDL particles and my doctor increased my Crestor dose from 10 mg to 20 mg a day. Within two weeks, I experienced two episodes of overall weakness and what I thought was angina. I also experienced fatigue, which I had not experienced before the increase to 20 mg. I had a stress test and nothing was found.

Neither my cardiologist nor my internist believe that this increase triggered these episodes; however, I am convinced that the increase either triggered or contributed to these problems. In the last week I have split my 20 mg tablets so that I am now taking 10 mg a day, and I am feeling better, although this may be a psychological reaction.

If the statins caused the joint pain, I have taken pain relief for many years that I may not have needed.

A very long time user of Lipitor/Zocor.... as a heart attack victim when I was 35 (now 75), I have been on the low-fat, low-cholesterol kick forever.... now being a skeptic after reading many minority reports on cholesterol and statins; Cholesterol Myths by Dr Ravnskov, Over Dose by Jay Cohen MD, and them being ignored by the estbishment and primary care doctors, we need better infomed users. I've had serious foot neuropathy and leg muscle cramps and back pain, but none of the medics will point to statins. Thank you for enlightening the public.

I TOOK LIPITOR FOR A FEW MONTHS AND BROKE OUT WITH WHAT DERMATOLIGISTS SAID WAS ECZEMA, DERMATITIS, ETC. NOTHING HELPED AND I PUT 3-4 DIFFERENT CREAMS ON MY LEGS AND ARMS. I FINALLY DECIDED TO HELP MYSELF WITH PURE BABY OIL, FULL STRENGTH BEFORE EACH SHOWER AND IN 2-3 MONTHS IT WAS COMPLETELY GONE. I STILL USE BABY OIL ALMOST EVERYDAY TO KEEP MY SKIN FROM GETTING DRY.

I am a 42 year old male. I have had some orthopedic issues, but other than that I am fairly healthy (exercise, eat better than most etc). I have been on 10 mg of lipitor for 5 years. A couple of months ago I quit taking the lipitor because of pain in my lower legs and sometimes arms. I was also having episodes of dizziness and weakness, and basically feeling run down. At the request of my Dr I stayed off of lipitor for 30 days or so, and the muscle pain went away.

I started taking 5mg of Crestor in early May. By last weekend the arm and leg pain was almost unbearable. I started having pains in my chest, extreme fatigue, and dizziness. I took my last dose 3 days ago. The leg pain is still there but has calmed down, but the other symptoms are still there.

How long does crestor stay in your system?

It's very disturbing to read all these stories. I really feel for you.

My experience comes from seeing what happened to 3 people close to me. They all took statins.

I started to look for information on statins, and other medications in 2004, and it continues to this day although two of my relatives are dead.

I have nothing to do with the health or pharmaceutical industry.

I saw the suffering and it made me very angry.

I am an ordinary lady in her sixties who lives in Sweden.

The situation is almost the same here as in the U.S.

There is very little discussion about risks/benefits with this kind of medicatication--or others.

I think it's a good idea to turn to the Internet and books to get other views about the cholesterol issue.

Is it really true that it's the cholesterol that is causing heart disease?

Are you sure?

Please visit:

www.thincs.org

www.ravnskov.nu

www.spacedoc.net

www.statinalert.org

Also search for "Stopped our statins" on Google.

You will find a lot of information.

Under "print articles" you will find a very informative article from The Weston Price Foundation.

Also search on the names of the different authors below.

Here are som books:

The Cholesterol Myths (Uffe Ravnskov)

The Great Cholesterol Con (Antony Colpo)

Book with the same title (Malcolm Kendrick)

Overdosed America (John Abramson)

The Truth about the Drug Companies (Marcia Agnell)

There are many more.

For more information about these books turn to the Internet.

It's good to have some other information than that given by doctors because most of them have been "educated" by the pharmaceutical companies themselves - and why should they talk about risks, side effects etc. They are interested in profits.

Finally - here are some side effects that I have seen:

pains in legs, hands, elbows, shoulders, knees, hips, cracking noise in ribs, muscle weakness, loss of hair, head ache, burning, tingling sensations in hands and feet, numbness, difficulties to swallow, loss of taste, ringing noise in ears, cramps, insomnia, irritation, depression, difficulty with short-term memory and then advancing into more serious problems.

These side effects - in 3 different people - all over 65 - did not come at once.

All of them had taken statins for years (Zocor)

It doesn't matter which product - all statins have similar side effects.

My relatives also had some other medications which makes it even easier for doctors (and patients) to say that it's just old age.

I am happy for those who get problems right away, because then there maybe is a chance for the patient and the doctor to see that there is a connection.

You really have to look out for yourself and the people around you!

Good Luck.

I had been taking lovastatin for a month because my cholesterol was 280. No medical problems previous to this, started to have muscle weakness in my right leg, stopped the medication, but it has led to neck pain and now after months being off this -- I'm experiencing muscle spasms. Had MRI's, cat scans, spinal tap -- all came back normal but muscle spasms continue. I blame the statin since I had no problems before this, but it was taken for such a short time (20mg) and no one seems to know how to cure these spasms -- anyone else have this problem?

My doctor prescribed Provachol (2002) suggesting that it would help me avoid a stroke or a heart attack. My mental acuity seemed to improve and climbing stairs no longer made me breathless. But after a while I had trouble getting out of chairs, cold legs at the end of the day (that warmed after elevation) and a surprising craving for fatty foods. I was hospitalized for a week for a blocked coronary artery, treated with blood thinners, in 2/27/05.

Continued Provachol until 5/06 when my cardiologist switched me to Crestor because of my complaints of muscle weakness. Continued to have muscle weakness with Crestor, later tried red yeast rice but still had muscle weakness. An emergency room doctor suggested I try Zetia after hearing of my muscle weakness concerns.

I began Zetia 4/07 but my cholesterol rose to 205 and my cardiologist prescribed Welchol. I am now having a sensitivity to house dust (dull headaches) since taking Welchol.

To learn more about Welchol I discovered all these comments about statin drugs. Now I no longer feel like a hypochondriac. I do not want ALS or immunity problems. I think going back to Zetia may be a middle of the road solution for me. I know that Provochol initially made me feel like I had found the fountain of youth by reducing my cholesterol. Stopping the statin drugs to find my muscle strength returned helped me pin point the cause. There must be other ways to identify problems associated with taking statins, because my blood tests never identified them. Thank you for providing support & answers to our drug concerns.

My mother took statin drugs for as long as I can remember. Although she was very much into fitness & followed her doctor's regimen for diet, exercise & medicines, her cholesterol was never under 300.

About four years ago she noticed that she would stumble on occasion & later developed "drop foot." Months later she was diagnosed with ALS. She died earlier this year at age 59, within 3 years of diagnosis.

Through my own research about the disease, I had heard of a possible connection between statin drugs & ALS, but every doctor that I asked said there's no evidence to support the connection. We're in a sad state if we're resting our hopes on the FDA to do something... And that's a pretty powerful lobby drug companies have in Washington.

My father has been diagnosed with PMA, a subset of ALS. He has been on cholesterol-lowering drugs for years. He was also on a slew of psychiatric medications. I am convinced that there is a correlation between all those drugs and his illness.

The pharmaceutical industry cares only about one thing: PROFIT. Watch television for a few minutes, and you will see nothing but ads for drugs.

This makes me more determined than ever to keep my own cholesterol in check by running and eating as well as I can. I've done this for years and have kept my numbers at the borderline level.

Screw the pharmaceutical companies.

I started taking Zocor in my thirties, due to family history and slightly elevated family cholesterol. I had aches and pains in muscles, & joints. I never made the connection with Zocor. In 2001 my joints started swelling and my MD at the time told me to stop Zocor immediately, but did no testing to determine if that was indeed the problem. Now seven years later I have seen way to many neurologists, rheumatologists, internist, and GP's to name or remember. No test has been able to give an accurate diagnosis for my muscle loss, weakness, pain, loss or diminished reflexes and neuro deficits. A few have told me you just need to learn to live with it. Fibromyalgia is the only thing that has been thrown out there as a possibility. I have been to Fibro clinics, spent way to much money and still feel as if I've lost my life (as it used to be). I'm going in August, once again, to a specialist to have a muscle biopsy done.

I was told as soon as I stopped the Zocor the problems should go away, but mine have only progressed and to the point to where I'm hanging onto my job by the skin of my teeth, as I can't work a full week and am not as productive.

At least after reading the posts on this site I know I'm not alone.

I have taken several different statin drugs over several years for high cholesterol. My leg cramps were so bad, they woke me up at night. I could hardly get up. I stopped taking any statins and also had to stopped Zetia for the same reason. Within 12 hours of stopping the statins, I could tell a difference. I easily got up, am not as tired, can stand for longer periods of time. I just feel on a whole, much better. I now can go to the grocery store without holding onto the cart for support. Slowly everything seems to be returning. I will NEVER take another statin. I have warned my whole family. I did my research on the internet, looking for muscle cramps and weakness. When I began to read about statins, I knew that was happening to me. I feel the statins will kill me before cholesterol will.

I'm a 60 year old female. I started taking Lipitor about 5 years ago. I'm not sure how long after that the effects started, because it came on gradually. I started having pain, especially in my right hip, and extreme stiffness and some pain when I got up after sitting more than 20 minutes. It got much worse in the last 2 years. I couldn't walk thru the mall more than a few minutes before my legs were so tired I had to sit down. And if I sat anywhere for more than a few minutes, I was so stiff and sore when I got up that I had trouble walking normally for awhile. The final straw for me was this past January when I could barely walk up the 3 steps to my front door. I had to pull myself up with the help of the handrail. My thighs felt so weak they wouldn't carry me.

All thru this I thought it was from arthritis, since it runs in my family. Then I happened to read an article in the newspaper about people having similar problems with Lipitor. They sounded like they had problems just like mine. So I told my doctor I wanted to go off the Lipitor for awhile to see what happened. He was totally against it, but I was determined. Well, it took less than a week, and I felt like a new person. Or actually, I should say I felt like my old person. My hip pain, which had bothered me constantly for at least 3 years, went away entirely and hasn't bothered me since. (I have been off the Lipitor for about 5 months.) I am no longer stiff and sore when I get out of a chair or get out of the car after sitting 20 minutes. I now walk normally again and can walk thru the mall with no trouble.

What surprised me most was how quickly I recovered after stopping the Lipitor. No one can tell me that that wasn't the cause of my problems. And even after all this, my doctor is still trying to pressure me into taking statins. He thinks I should try a different one. My feeling is they work all the same. Frankly, I don't see what good it is to have low cholesterol if you can't walk and are sore all the time. Why are these doctors pushing these drugs when they are obviously hurting people? Are they getting kickbacks? My doctor never once suggested any natural remedy to lower cholesterol.

I am on Tricor and am experiencing a rash on my back like mosquito bites and back bone pain which moved around to along side my arm pit and also into my breast.

My Arm is tender to the touch I cannot even touch skin on the arm it hurts so much. I stopped taking Tricor yesterday to see if the syptoms disappear. Has anybody else experienced the same syptoms. On one arm my flesh is actually painfull to the touch. My back muscle is also swollen.

Thank you

With all of this evidence, why isn't something done about it??? People are hurting!!! Why doesnt the government protect us!!!

This sucks. I swear, if ALS is being caused by this drug, I will be so pissed off.

we buried my mother of 4, grandmother of 13 on july 28th of 2008. she was diagnosed with ALS 2-3 years ago but doctor believed she had it several months before. one doctor even performed carpal tunnel surgery and when that did'nt help,shoulder surgery. she claimed she never had any problems until she started taking baycol but she may have taken other cholesterol medicines also. there are still many law firms that have no knowledge of a link to ALS from cholesterol drugs. something needs to be done to stop people from suffering such horrible deaths if ther is a link. is there any help out there?

In July of 2007 at 58 years old I went into the hospital with chest tighness. I had some blockage and had three stints put in. Although my colestrol was very good the doctor put me on 20mg of Lipitor. I was on the Lipitor for about 4 weeks and exsperinced some cognative imparment.

The doctor switched me to 5mg of Crestor and 10mg of Zetia. The cognative imparment seemed better. I was in cardic rehab and doing well, feeling stronger as I increased my exersice. In October I started to experince server pain in my right knee. The doctors could find nothing wrong with my knee soon my left knee began swelling and became very painfull.

I then started experince muscle pain and weakness. I kept asking my doctors if this could be from the statins and they would just brush it off as not likely. By the end of December I felt like I was 80 years old I could hardly get up the stairs and was in a lot of pain. I felt scared that I might have ALS.

I just deciced to stop the stains. It is now July of 2008 I am improving but still experince a lot of muscel pain when I do any phyical activity. I am a long way from how good I was feeling back in September when I was in cardic rehap.

I am taking Simvastatin and Tricor. On July 6th, I tore my calf muscle simply by stepping off my bed (I was standing on it to kill a spider). Not one doctor (ER, PCP or Ortho) mentioned anything about taking statins and muscle weakness/tears.

It was a newspaper article and my physical therapist that clued me in. I am very active (walking, weights, elliptical, bike) so I could not understand how this happened without warning!!

Pain in the inner thigh and a bit in the upper thigh. Can't lift my leg without terrible pain, comparable to a knee replacement.
After reading about zocar, I've come to the conclusion that that is the problem. If, indeed, it is the problem, what can one do to combat the pain and heal the muscle tears?

Thinking I was suffering from fibromyalgia with many of the key problems, I started with the fish oil, COQ10, and other arthritic helps. But last week my right leg collapsed under me. I had first torn a tendon in left foot, and began wearing a support boot, but I started to feel much worse.

Both legs are weak now and I'm using a cane. Air conditioning (76deg.) bothers me and I put slacks and socks on to combat the cold. Even my breathing seems impaired. While I was checking the internet I came across this site. This statin problem is new to me and I was startled by the many comments I've just read because I too have been taking Crestor for 3 years and another statin prior to that.

I've decided to stop taking statin drugs. Part of my weakness may be fibromyalgia but I need to make this change first. It's a frightening thought that I may poisoning myself.

At the age of 57 my dad suffered chest pains and had to have 3 heart stints put in (but did not have a heart attack). He was very healthy but it was standard procedure to be placed on Zocor, Plavix, and a blood pressure medication after having stints put in. The first year he complained of muscle weakness, aches, and minor atrophy in his hand.

He took himself off of Zocor because he said it was "killing him". Two months later he started having slurred speech and we took him to a neurologist. He was then diagnosed with ALS. He lived for 16 months after being diagnosed, passing away in May of 2008. There was no doubt in my dad's mind (or his family's mind) that the Zocor triggered his ALS. It is too late for our family but we hope to help others with our story of loss.

I was on Vytorin for approximately 2 years, and in Dec. '07 my Dr.increased the dosage. It started with pain in my neck and back. By May, I couldn't walk without pain in my hips. I had just lost 30 pounds, and never had pain in my hips even at the heavier weight. Turning over in bed was excruciating. My memory has gotten so bad I have feared early onset Alzheimer's Desease, as AD runs in my family. When the Dr. realized we had increased the Vytorin, he told me to stop taking it immediately. Within 3 days I felt like a new person, and within a week I was pain free.
Four weeks later, blood work comes back 349. So I did some research & came up with the combination of Red Yeast Rice(RYR) & Fish Oil.
Three weeks later, my neck started hurting, my hips started cracking again every time I straighten up. The mind is foggier. Back to the Dr. He doesn't think it's related, because the bloodwork didn't show any muscle damage.
But I know it's related. I know how I felt in May and June, and I know how I feel now. It's identical.
More research. I find that RYR is a statin, and can cause the same side effects as any statin drug. I'm off the RYR, and feeling 95% better only 2 days later.

I think something should be done about the prescribing of LIPITOR. I have lost all my muscle use in my legs and my arms ache all the time. I have asked my Dr. about this being linked to Lipitor and he says because of my Diabetes and High Blood Pressure and my chances for a stroke, he would rather I have this problem than a stroke. My cholestrol is 112, my A1C is 5.4, my blood Pressure is 104.56. I think I would rather have a stroke than not being able to do anything I use to do.

My dear aunt recently died of ALS. Just like the many stories on this website, I believe she never would have gotten the ALS if she hadn't been taking a statin med. She was a relatively healthy and active 65 year old, whose main health complaint was arthritis. She was put on a statin for slightly elevated cholesterol.

She began by getting severe muscle pain. She kept getting progressively worse: she began to have difficulty swallowing, difficulty talking, difficulty even walking. She went through a battery of tests (MRIs, muscle biopsies, etc) and they found nothing. No doctor ever even considered it could be a side effect nor did any doctor ask her what meds she was on.

She suffered for 2 years trying to find out what was wrong, she was finally diagnosed with ALS and died within 6 months of the diagnosis. There is no question in my mind it was due to the statin med. We have NO history of ALS in the family. I had never even heard of ALS until my aunt's recent death ... and now, I also know of a co-worker (she's only 45) who was just diagnosed with ALS. She also has no family history of ALS and she also was on a statin med.

Her progression of her symptoms is an exact mirror of what happened to my aunt. Both my aunt and my friend say that the "problems" started when they began taking the statin meds. I'm almost 50 myself, as I said I'd never even heard of ALS and now, I know of 2 cases of people close to me who were on statins and got ALS (seemingly out of the blue). I do not trust the FDA to do what's right, I believe they are too cozy with the high-paying lobbyists representing the highly profitable statin manufacturers.

Remember how many years it took for the tobacco companies to admit they had known of the cancer link to cigarettes all along--and to this day, they still do NOT admit the truth. I feel I was fortunate, because when I was put on a statin med ... I had an immediate adverse reaction: muscle pain, difficulty swallowing, headaches. My mom has tried 3 statin meds and she too could not tolerate them; she too had immediate chest/muscle pain. I believe we were lucky.

Since we got off the statin meds quickly, no permanent damage was done. My aunt and my co-worker were not so lucky. It MAY be just a small number of people who get these serious side effects, but there definitely is a link between statin meds and ALS and ALS-like symptoms. The FDA and the pharmacuetical companies should, at least, list the potential risk in the statin literature. I believe statins should NOT be made available over the counter; they are much too dangerous

What is needed now is studies on this potential link so that there is empirical evidence to support the extensive list of anecdotal stories listed on this website. In my opinion, for the FDA to even "call for more studies" on the potential link between statins and ALS (which they HAVE), then this is clear evidence that a link is likely there.

Again, the FDA generally rules in favor of whatever makes a bigger profit for the corporations. I believe the FDA would ONLY state that further research needs to be done if they were backed against the wall, in the face of increasing cases of ALS & statin link.

My brother was diagnosed with ALS a few weeks ago. He started having slurred speech about 5 months ago. He also started having trouble swallowing. He had been taking Zocor for several years. After doing research online he decided to stop the Zocor.

His swallowing immediately got better, however, his speech is getting worse. He is also having weakness in his right arm. I started on statin drugs about 7 years ago. I have decided to also cease taking Crestor. I am convinced Zocor is responsible for my brother's disease.

The makers of these meds should open their eyes & stop denying the link between these drugs & various side effects. It's too late for my brother, however, maybe others will now have the knowledge that we did not have & will be able to make the choice of not starting on these dangerous drugs.

My mother was on medication for lowing her cholesterol.I think it was Lipitor. She was on them for about 3 years and one morning she woke up and she was having trouble speaking. Her voice was garbled. Thought she had a stroke but scans and mri showed this wasn't the case.

Eventually she lost her ability to swallow and breathing became difficult. Took a year and a half to get a diagnosis of ALS. She died within 2 years from the first symptom. On some ALS discussion boards different people were noticing that several of them had been on cholesterol lowering medication and we were wondering if this was the trigger.

Asked the doctor and of course the reply was absolutely not.My mother had bulbar als and died at the age of 73.Usually if you develop ALS at later age it is because something has triggered it. I do believe it was her medication. I would not encourage anybody to use these meds. ALS is a terrible way to die. There is no cure.

I started on ZOCOR about a year ago and experienced severe muscle soreness in my legs and stiffness when I would get up out of a chair. I lost my memory and was diagnosed with TGA (Transient Global Amnesia in Germany in April 2008) I forgot where I lived and my husband's tel number. I forgot where I worked.

I was rushed to the hospital in an ambulance and they thought I was having a stroke. After reading all the above comments, I am now convinced that it was the ZOCOR. I took CoQ10 and even know one of the doctors that researched it.

It did not help. My cholesterol is over 300, but I will try other ways of dealing with that than the statins. I was only taking 20mg. I have been off the ZOCOR for about two weeks and already feel better. I would rather have high cholesterol than lose my mobility and memory.

My mother passed away in 2004 of Als. She was 73 yrs old and had far too much spunk to die. she had been on cholesterol medication and at 71 started to slur her words, had garbled speech and would choke while eating.

She was originally thought to have had a stoke but nothing showed up on the mri. She was diagnosed about 1&1/2 yrs later and died about 6 months after her diagnosis. Generally 71 is not a very common age to be diagnosed seeing as generally one is diagnosed in their 50's.

When diagnosed with ALS at a later age would be that something had triggered it. I find it very upsetting reading all of these testimonials to think that a "miracle drug" could be linked to my mother's death.

She will never be able to watch her grandchildren grow up or see her daughter get married. It is a horrible disease that robs one of their dignity, and of the many beautiful experiences that could have been witnessed. I feel that she had too much life in her to die at that age, especially if it could have been prevented. It breaks my heart.

I have normal LDL but low HDL. My baseline HDL has been as low as 26. With diet and exercise I am able to raise my HDL to the mid-thirties. I tried Niaspan but quickly gave up on it due to side effects. At my prodding my doctor started me on Lipitor. With Lipitor my LDL dropped well below 80 but my HDL stayed in the mid-thirties.

After being on Liptor for a couple of months I woke up one morning and had no idea what day of the week it was or that the company picnic was the day before. At work I could not make simple postings of dollar amounts from hard copy to electronic spreadsheet (I would forget the amounts).

At a meeting I could not remember names or how to structure sentences. At home I kept asking my wife the same question as I could not remember her answer. She became so concerned that she forced me to see a doctor. The doctor thought I had a mini-stroke but ultrasound, brain scans and all other tests were normal. I mentioned Lipitor but the doctor dismissed it (no way). At the end of the evaluation I was diagnosed with transient global amnesia.

Not wanting to be a vegetable for the rest of my life, on my own I stopped taking the Lipitor and promised myself that I would give Niaspan another serious shot. I am now taking 2000 mg everyday and have been doing so for 6 months. For the first time in my life all of my liver tests are good. My HDL improved to 43 and my LDL is now 80. Even my bilirubin scores (Gilbert's syndrome) are now in the normal range.

This is all without diet or exercise. What is most surprising is that my memory has improved (not just returned to normal) and my performance at work is outstanding.

After a couple of months my Niaspan side effects (nausea, headache, backache, flushing) went away. Prior to Niaspan my doctor implied that I was a heart attack or stroke waiting to happen. I now feel confident in my health and the future.

I am posting this message only for the purpose of helping others.

BW

Even though I didn't see the original article, I feel compelled to contribute my experience with statins. I'm a 68 years old, 5'10", 195#, and would not be considered "active." I'd been taking statins in the various prescription forms for years, and often complained to my primary care doctor about aches and pains. He'd change my scrip to another brand-name, and the symptoms would abate for a while.

Around the beginning of 2008 I began to have muscle weakness and pains in my arms. By mid-March, I was struggling to walk or stand for long periods of time. By late April, I was in such bad shape that I entered the hospital for 2 days, where I had a muscle biopsy, revealing the considerable presence of statins. I was immediately put on 60mg of steroids (Prednesone), and enrolled in outpatient physical therapy. The use of statins was suspended in early April.

The steriod dosage proved to be too extreme, and though I had a short period of improvement muscle-wise, I soon began to lose ground again and more rapidly than before so that by early June, I returned to the hospital for 4 days. The CPK numbers (muscle enzyme tests) were 16,000+! There I was diagnosed with statin-induce rheumatic myopathy, compounded by steriod-induced myopathy. The reduction of steroids immediately improved by situation, and I was transferred to a rehabilitation hosptial for 5 weeks.

I'm continuing on the reduced steroid treatment and do an hour of outpatient physical therapy 3 times a week. I've regained almost all use of arms and legs, and use a cane only occasionally.

This has been a harrowing experience. I feel fortunate that my condition is improving on a daily basis. But, I am refusing all statins (I love the customary questions doctors/nurses ask, "Are you allergic to anything?" I shout at them: STATINS!!!) My primary care doctor tried to talk me into taking Zetia or Welchol -- both of which cause constipation for me, and both list muscle weakness as a possible side effect.

I'm learning to live with my 256 cholesterol level without any anti-cholesterol medication. I am also seeking another primary care physician who is not wedded to the conventional medical wisdom.

Readers should also know that the statistics used to bolster the use of statins are not based on individual patient experience. The operative statistic is that over-all and generally, the use of statins reduces the number of heart attacks, etc, in general population -- so the DOCTORS SEE FEWER HEART ATTACK PATIENTS. I'm so glad they see fewer heart patients, I wonder however, are they seeing more patients with muscle weakness, joint pain, and the host of other conditions described by the previous contributors.

The CPK test is a simple blood test that can be done whenever your doctor checks your cholesterol levels, ask for it and a liver enzyme level test as well. Any CPK level over 200 is abnormal. Mine is still in the 1100 range, and the Neurologist is not happy, six months after stopping the statins....what does that tell you?

I started taking Simvastatin a few months ago. After only a few months I began having symptoms of anxiety and panic. I told my doctor that I had begun to have muscle spasms in my hands at night when I was sleeping. Next I began to experience pain in my muscles and then extreme pin pricks of nerve pain in my hands, neck and feet.

I also felt a buzzing in my feet. I developed symptoms similar to carpal tunnel in my arms and often felt too weak to hold my little grandchildren. I am 55 years old and 1 1/2 months ago was in great physical and mental condition. I now have increasing episodes of night spasms in my hands, throat, feet, shoulders and neck, etc. It wakes me up usually just before I have reached a state of sound sleep.

I am sleep deprived at this point and do not look forward to bedtime. I often have burning sensations in my neck and shoulders and my heart is often racing. I feel like I've been given a nerve agent or poison and my body is at war with it

I know I was perfectly healthy before starting this drug-now every day is a huge challenge to get through. These muscle spasms in the evening are signs of ALS or Parkinson's disease I believe. I am worried, has anyone recovered from these side affects? Help.

After reading just one page of comments regarding pain and statin drugs, I am really concerned about my own health. For the last 10+ years, I have been on any number of statin drugs to help my cholesterol levels. These include Zetia, Vytorin, Crestor and now Zocor.

The Zocor was prescribed about 9 months ago. I have always exercised but about three months ago increased the speed and length of my walks. Usually at a pace of about 4.5 mph and three miles 4 to 5 X week.

The pain behind my left knee was the first sign. Then came pain along my shins (both legs). Sometimes the pain starts during the walks so I will slow my pace. ALWAYS the pain worsens at night. Stretching, massaging, elevation or moving around does not make the pain subside.

I am experiencing pain in other joints, as well.

I now know that I have to get to my doctor, ASAP>

I have only been taking simvastatin 40mg for only 3 days. I have had severe flu like symptoms like my body has been beaten. I'm only 44 years of age. Today I didn't take the pill and I feel so much better. I think I will try taking the Omega 3 fish oil pills to see if that helps.

I think I had rather die of a heart attack or stroke than to feel this badly all the time. It isn't worth it. My doctor got mad when I told him this as I really don't care.... its my body not his. I do however still take my BP meds as I have had no complications with it.... other than the fluid pill they put me on.... it caused my BP to drop too much at one time.

These statin drugs for cholesterol should be checked out more thoroughly before being passed by the FDA. You know we rely on you people for our lives.

Have been on Lipitor for about three years - startd having problems with leg muscles after walking - complete fatigue in Leg muscles - told my Doctor - he dismissed me. He ran tests - all fine - few more months went by and now I could not walk 30-40 feet without my legs feeling like lead balloons - like I had just squatted 200 times or something. I would have to stop and sit down before I could walk again. Called Doctor & told him this - he had me "come right in" and now took me off Lipitor - has been 5 weeks and still no improvement at all. I'm a little nervous it is "permanent" damage like I've read about ...

My 61-year-old husband was put on Lipitor in 2001 following cardiac bypass surgery. He started having problems with aching muscles with even slight exercise and never regained the activity level he had experienced prior to his surgery.

He used to be very active and we walked several miles in a walking club every weekend. He tends to deny symptoms and attributed any problems he was having to after-effects of the surgery and age. His Lipitor dose was increased several times and he was switched to the maximum dose of Vytorin about a year ago. He continued to have sore muscles and stiff joints, numbness in his hands, and lack of energy. I noticed that he seemed to be having some memory problems also.

About 3 weeks ago he had a severe episode with bouts of uncontrollable muscle spasming followed by extreme weakness and fatigue, shortness of breath with very slight exertion, and severe muscle pain. This was on a weekend and he would not go in to the ER. After some research on the Internet, he stopped the Vytorin. He went in to see his primary doctor (not the cardiologist who put him on the medication)that Monday. His primary agreed that he was having a severe reaction to the Vytorin and told him to stay off it.

The weakness and pain have continued and are, in fact, slowly getting worse despite the fact that he is off the medication. He is now scheduled for evaluations by a rheumatologist, a neurologist, and a cardiologist. The possibility that this may be ALS syndrome has us terrified, of course. I got him Coenzyme Q10, but am afraid that it may be too late to help.

Please pass this on to the FDA. Since my husband has had this experience, I have spoken with several people who have relatives or friends who have experienced severe side effects to statins. Several of them have not returned to normal even years after being off the drug. It can't be that rare if there are so many people experiencing problems within my small circle of acquaintances.

In response to Sunday , Sept 21 article: I have taken all the prescription drugs on the market for lowering cholesterol. All had side affects on me from muscle pain, memory loss, weakness, and a very bad skin rash. It is my opinion from my own experience that "statin" drugs are not a good solution for the problem.
Through my doctors approval I began using Flax Seed Oil (1000 mg) with 700 mg of Omega 3, and Red Yeast Rice (600mg), One tablet per day of each. My total Chol. dropped from 216 to 135. These are natural supplements to the cholesterol problem.

I began taking a statin drug for the first time about 4 months ago. Painful symptoms have crept up slowly but now seems to be full blown to me which brings me to this site. After a 2nd blood test my cholesterol went up even more to 270ish so my doctor told me to double the dosage.

I was so ill after that dose that I was in bed all day vomiting and so nauseous. I stopped the double dose for a day and took it the following day....again I was sick. My doctor told me to watch my diet and continue on the 10mg dose. I am suffering from such sever lower back, hip and neck pain that I cannot even turn over in bed.

I am so physically and mentally exhausted that I feel like I am in a brain fog. My leg muscles are so weak that I am having difficulty getting in and out of the car. I have been thinking this is so not normal that I am going to my doctor tmrw. I am just sick over this whole thing and must work on another way to get my cholesterol down as I cannot take this anymore.

My husband took Lipitor for a couple of years and started exhibiting forgetfulness too and I asked the doc if he'd ever seen this happen and he told me no..

of course we took him off of it but then went on to others and he was better. I think that stuff is terrible to take. I am also wondering if this med either can begin the onset of Alzheimer's or contribute to it's onset in some way. Or, maybe Lipitor is a precursor med to someone who is going to get Alzheimers's. I don't know but it's terrible stuff...My husband was diagnosed with Alzheimer's a few years after taking Lipitor, he died last July 2007. I always thought that Lipitor had something to do with the Alzheimer's disease as nobody in our entire family (both sides) has ever had Alzheimers and my husband was diagnosed at age 67.

I am a 40 year old, African American female. I workout 4-5 times per week which includes a 3 mile run on most of those days. I eat well and had honestly never been in better shape when my doctor prescribed Caduet.

My blood pressure was high and has been for years. He gave me about 3 months to try and lower it on my own prior to prescribing the medication. I have now been taking Caduet (half the pill, per his instructions) for 2 years. My blood pressure is in check however I suffer greatly from memory loss.

Initially it hardly noticeable for example, inability to remember where I left items, what I told my husband the day before etc. Now however it is more advanced I can't remember how to get from point A to point B even if I have traveled there before (not familiar places like home or work but a new address or office building), inability to recall information (information, articles etc. for work can't retain or recall the information), can't remember people I just met (not just their names, but have no recollection of meeting them before).

I just read the article in last night's paper and called the doctor's office when they opened at 9:00am. I to pray he'll take my concerns seriously and give me the answers I need. At this point, however I think my plan is to try to manage my high blood pressure with alternative measures.

I am getting so desperate, I am prepared to stop taking Lipitor in hopes that my malaise ceases. At least one year ago I started complaining to my Dr. about numbness on my left side, pain, slight spasms and swelling. Following a series of Catscans, MRIs and referrals to Neurologists nothing conclusive was determined.

I was told it was not Fibromy.. or MS. The medical community has no explanation for my on-going symptoms. After reading Graedons reports and other testimonies I am prepared to take matters into my own hands. I have been on Statins for about 8 years.

I'm 51 and my Dr. put me on crestor for high cholesterol (275). After one month he took me off of it for one week. I had real bad headaches, heart burn, feeling run down and jittery. By the third day that I was off of it all the symptoms went away. When I started back up after the week off they came back by the second day along with muscle pain in my arms and back. I swim 3 to 5 times a week and while on crestor it was getting tougher to swim. My arms felt like they were going to fall off. I've been off of it for 2 months now and all the symptoms are gone. I go back to the Dr. for another blood test in a few weeks. We'll see what we do next.

First I had the stroke at 53, then I found out that I had elevated cholestrol. I was put on Lipitor. I thought, well these headaches, dizziness, and no energy, hard to sleep, legs achy, tired all the time and memory loss was all from the stroke.

Then one day, I said, if I want to make Christmas dinner for my family, I need to stop the Lipitor to see if that is why I am having all these problems. That was it for sure. Lipitor lowered my numbers, but man I was not worth living. It worked, I became the person I was before the stroke once I stopped the Lipitor.

Then, another blood test showed high numbers again without the statin. So another statin was tried, all of them, made me ill. So, finally the Dr gave up on me and said, fine take nothing, there is nothing you can take, unless you try CoQ10 for two weeks and then go back on lipitor. I said, I will.

Now that has been 1 week and so far doing good and I can say that I am less foggy with the Q10 in the morning, and Lipitor at night, but have night sweats now, have a hard time walking again, difficulty going down the stairs. I am going to stop lipitor tonight and go and see an alternative medicine dr. because the cardiogist and my family dr. only believe in statins and will not believe me when I tell them how I feel.

I got another chance after the stroke and even though I inherited this factor of high cholestrol, I do want to be around awhile. IF exercise, diet and I mean become a vegetarian, will help me live longer and not have to stay in bed all day, that is the way I am going. Please help us FDA and get those bad drugs off the market. Yes they lower the numbers, but are they really keeping us alive from having another stroke or heart attack when they cause death in other means and burn our muscles away?

As for Crestor, I never ever felt as bad in all my life while taking that drug for only one week and it took 1 month to get it out of my system. I still can't walk like I use to.

I am a 59 year old general contractor who can no longer lift a hammer or even take the cap off a Sharpie marker and I attribute this to the statins I was on for a total of 2 1/2 years. I was put on Lipitor for a year and became very depressed, so my doctor switched me to Vytorin in February 2007.

Starting in December of '07 my feet became swollen and red and the bottom of them hurt, especially with shoes on. They improved a little bit in a couple of months but then I started having shooting pains down my legs and arms and into my hands. I was diagnosed with carpal tunnel syndrome in my right hand, but the pains were still occurring in both arms and legs.

Then in early August of 2008 I went to a neurologist who ordered all kinds of bloodwork. The only abnormal result was a muscle enzyme level of 6000 (normal is 250). He ordered an EMG and the neurologist who did the test made a preliminary diagnosis of Statin Induced Myositis. I took myself off the Vytorin on August 25th. Since then, my muscle enzyme level has gone up to 14,200 and I am having a muscle biopsy next week.

After further discussion, the doctors now think I may have Polymyositis as well as the Statin Induced Myositis. I have extreme weakness in all my limbs and hands, trouble swallowing and opening my mouth. My wife has to help me dress and go up stairs. I never had any muscle weakness in my life until I went on statins, so I am convinced they have caused all my problems.

Anybody have any experience with hand and arm tremors while on statins? My sister is 70 and has had a left arm tremor for a few weeks. It now seems to be starting in her right side too.

I was on Lovastatin for over a year and developed severe leg cramps. I stopped taking it and the cramps ceased.

I was on 10mg. crestor for five months. During that time I complained to my Dr. that I couldn't stand the joint pain and muscle aches. She really didn't suggest anything. Then I had a lab test and the ck and alt were very high. I immediately stopped taking it. My health has not improved I still have the pain and no energy for walking or exercising. Lately I have an electrical impulse in my right heel. I have never felt so scared that I won't be able to walk someday. I will never take a statin again. I would like to know if there is any way of improving my strength in my legs. A.W.

On November 6, 2008 I was called to the emergency hospital about my father falling down and then throwing up out side his doctors office. He was at a doctors appointment at the time of the spell, his doctor took him into his office to see what was wrong with him. My brother said to me that they rushed him to the emergency themselves because the family doctor had froze and didn't know what to do.

This is when they called me. When I got their my father was very pale and weak, he said that his meds had ran out. He then told me that he started taking them again three days ago and that's when he started feeling sick. He also said that when he was off of the meds for a week, that he started to notice that he was more aware of where he was. I have always questioned the meds and my family has always gone against me about what I've been noticing.

The doctors and my sisters wont listen to what my father has been trying to tell them of what he feels, they just talk over him and suggest that he keep taking the meds. I went this morning to see him and he is not himself, he slurs his words, he peed on himself and does not want to eat. After finding this website I will go in the morning and take all the meds that he is taking and google them to see all the symptoms for each one of the pills he's taking, 11 pills in all, a day.

I was taking Pravachal for about 8 years without a problem. About 2 years ago my insurance company switched me to Pravastatin (generic). At around that time I developed a bad rash under my breasts and underarms and in the groin area. I went to dermatologist and was told it was either heat rash or allergy. About a year ago my PC doctor increased my dosage to 40mg and I almost immediately broke out in hives the size of quarters. After doing some research I decided it was the Pravastatin that was causing the hives and rash so I went off. Within a week the hives started to subside and within a month they were completely gone as were other side effects like feeling awful all the time, joint aches, mental confusion.

My doctor told me after the month that I had to keep taking statins because my cholesterol is too high (240). So I am taking them again and again have the same symptoms. I also tried Lipitor and had the same reactions. After reading all of the the experiences listed here I will be going off the Pravastatin again, for good, and finding an alternative. I've read that Policosanol (5mg daily) works well and has no side effects.

Over the past 2 years I have been prescribed Prevachol, Crestor, and , finally Lovastatin---all in low dosage. After about 10 days, the muscle and joint pains would begin with each. I have decided to decline any further statins. I am 78 years old and healthy except for the few aches and pains not caused by the statins. I am calling my Dr. tomorrow and telling her that I will work on the cholesterol problem without statins.

I have been on statins for the last few years. When we moved to our present address last year, the new doctor prescribed Rosuvastatin, which was fine until the last couple of months. I am in increasing pain in my joints which keeps me awake at night. I also have trouble sleeping. At the moment it is very painful to walk. After having read the comments from readers of your site, I shall make an appointment to go back to my doctor and tell him about my symptoms. I do take other vitamins as a matter of course, which include co-enzyme Q10, zinc, Omega 3, Glucosomine, Blood Sugar Balance remedies for diabetes.

My goodness, I was led to believe that 'some light muscle cramping is possible, but very rare'. How stupid of me! I am now 60, but two years ago, ran about 40 to 50 miles per week, with several marathons completed. After a few months, on Crestor, I found my shoulders and back muscles just trashed, after a days sailing. It took over 2 months to recover. Later, I experienced sever leg cramps, in the latter stages of a 12 mile run. My Dr. was adamant it was not the drug, so I kept running, but slowly, figuring I had just overdone it that one day and would slowly recover as usual.

3 more months, and I was almost paralyzed and, after about 2 hours driving, could hardly climb out of my car! Then, the Dr, decided to reduce the dose; when that didn't work, later deciding to switch to Zocor. On the Zocor lable is a warning "not to eat grapefruit.." As a runner, I consume citrus fruit regularly, so that was THE day I decided not to take Crestor, nor Zocor; against my Dr. continuing to assertively promote this drug. I have since mostly recovered, but still experience some weakness, when running hills, and take an unusually long time to recover from long runs.

Recently, I have experienced pains in my calf muscles, despite not running very aggressively. I am really concerned now that I may have done some permanent damage and am experiencing a type of Myalgia; but I cannot get a straight answer from the Dr. nor is the FDA apparently interested.

I took a statin drug, Crestor, for years, along with Zetia, Niaspan, CoQ10, and an aspirin. I had terrible muscle pain, stiffness, and general aches that I contributed to getting older. I am 55. I started having trouble with my right arm in Oct.07 . I had what I thought was a pinched nerve and I had muscle weakness that made it harder and harder to use my arm without great pain and strain. After a year of various interventions from massage therapy to seeing an orthopeadic surgeon, I decided to see an acupunturist. He was alarmed at the number of drugs I was on and the large daily dose of Crestor,40mg. I am working with him and my cardiologist to get off my drugs. I am now taking 10mg. Crestor every 3 days . My arm is miraculously getting better and I have hopes of regaining muscle strength that I have lost over the years, not only in my arm but in my whole body. I did not realize how bad off I was until I started feeling better.

What good is it to prevent a heart attack only to cause muscle and nerve damage that can lead to kidney failure or ALS? I know all drugs have risks. My concern is that the risks of statins are not being conveyed to the patient so that they can make a truly informed decision.

I think what saved me from some of the more devastating effects that I have read about on this website is that I was already taking COQ10 when I started the statin and my cardiologist has all his statin patients taking CoQ10.

I have always wondered how a drug that breaks down muscle tissue can be given to help the heart since the heart itself is a muscle?

After my friend's father-in-law came down with ALS, his Mayo Clinic dr. made a comment about statins and ALS. The father-in-law had been taking Lipitor and over a year he became bed ridden, and will not recover. He had terrible leg pains, weakness, and got to the point where he couldn't even stand up. My Husband, who is on Lipitor, started, about 3 months ago, to experience the same problems. He was in agony, especially during the night. I went into this site, and showed my husband all the comments. He stopped the Lipitor and, thank God, his legs are much better. No more statins for him. His dr. is upset with him, because he had had bypass surgery a few years ago. The thought of getting ALS is frightening. I don't know what he will do, but it won't be taking statins!

Some years ago, I volunteered for a Statin study at a major hospital. I was dropped due to a depression, but did receive a statin from an MD.
I experienced severe leg and muscle pain to where tears rolled down my cheeks with every step. I directly contacted the Statin researcher MD, and she told me she was finding it to be a bad drug, and that NO woman of age should take it at all, it was not a good medicine.

I asked why her research was not being told wide and near. The sad answer, The university would not want to lose the drug companies money, so she could not publish her findings. Sad and disgusting. She also advised me to take COQ-10 and a guaranteed high quality one, suggesting from Denmark as they were controlled there.
I stopped the statins, and returned to normal, thankfully. Recently, my primary physician, concerned with my cholesterol level asked me to take a 1/2 dose of Simvastatin, reluctantly, I agreed, now at 10mg. I ran out and am waiting for the mail order refill, too broke to go to Costco for a 30 day supply. I know I shouldn't but, I have my old, yes expired prescription for 30 mg Zocor, and have been splitting those in 3. Think I will not do that any more, and when the 10 mg Simvastatin arrives this week, may split those in half.

I really do not want to take this medicine. I wish something honest and definitive would come out about statins. Wish I had a fraction of the money spent in TV ads for bad medicines. I am 2 months behind on my health premiums, which are increasing 100% plus $1. Jan. 1.
I am 78 responsible for myself, worked my whole life, and now owe, owe, owe.

I have tried almost every statin except Lipitor (which I refused to try) as the memory loss problem concerned me. I not only had muscle problems, but joint instability. I reported this to my MD and he said it shouldn't affect my joints only my muscles. Several years later he now says he has a couple other patients complaining of joint problems. My knees literally would give out on me with sit- stand activity. Unfortunately, I have uncontrolled cholesterol problems and I can't tolerate any of the statins. Thank you, Debbie

My husband had been on zocor for one and a half years an began to experience leg weakness. He took himself off of it because he thought the problem was the statin. His doctor was not happy at
all. Then he developed ALS soon after. He died May 17, 2008 and he KNEW zocor triggered this HORRIBLE disease.

The doctors are pushing statins, even if people do not need them. Something needs to be done
ASAP, because the number of ALS patients are increasing. I hope people wake up and
do not always take what their doctor prescribes. Doctors can be wrong too.

I am 90 years old. About 35 years ago at a physical I was told that I had high cholesterol, however the only treatment was to eliminate fat from my diet. However about 20 or 25 years ago my Dr put me on Mevacor as my cholesterol was about 300--it reduced the reading a little, however at that time I had blurred vision. The eye DR suggested that I take a 500 mg of niacin. Which I did. When my blurred vision did not clear up I changed eye Dr, he told me my niacin did no good for my blurred vision so I discontinued the niacin. About 6 months later I had another blood test and the reading was over 300 so the Dr put me on 2 20mg mevacor. About that time I read about niacin helping high cholesterol so I started taking 500mg of niacin and it lowered my cholesterol and has kept it down to where my heart DR about a month ago complemented about my such a good reading on my cholesterol. I had continued with mevacor and about 12 years ago my left breast become painful to I was very careful to touch it I was telling a friend about it he said both of his breasts were painful and enlarged he told me that his Dr took him off mevacor and that has helped so I stopped mevacor my swelling has gone down and no pain for at least 10 years I now take 4 500 mg of niacin daily

I was put on Lipitor 12 years ago; but discontinued it when I started feeling worse and worse. I was then given Zocor. In a short period of time I experienced arm and leg pain and weakness. Finally I was unable to walk up steps. Accompanying these symptoms were a rapidly multiplying list of afflictions: internal nose bleeding, loss of half my hair and all the hair on my body, and finally I started to forget words 4 or 5 times a day.

I became almost an invalid. My Dr. did not believe that these symptoms were from Zocor. In desperation I went to a neurologist; he told me he definitely thought my problems were from taking Zocor. After I stopped taking it I took a year to fully recover. Now after 10 years I am taking Pravastatin 10 mg. the smallest dose ! So far in 3 months I have no side effects and it immediately lowered my cholesterol 100 points.

I am strictly documenting daily my response. if I have even 1 side effect I will instantly discontinue this drug and never take another statin.

I have been off litpro for 3 years.. I still have muscle pain and a very high cpk.. 500
My first fear was that I had als but then the more I researched I realized it was symptoms from Liptor.. is there anything i can take to speed up the recovery? I take coq10 just not sure how much to take/ any help or websites would help.

PEOPLE'S PHARMACY RESPONSE: WE SUGGEST 150 TO 300 MG COQ10 DAILY FOR PEOPLE TAKING A STATIN. YOU MIGHT WANT TO CONSIDER SOMETHING SIMILAR.

A couple of years ago a doctor put me on symvastatin. Shortly thereafter I began having severe total body myalgia and then my urine began looking really concentrated. I looked up everything I could find about reactions and side affects and took myself off it. I notified the Dr and he said I could cut down the dosage or discontinue it. I told him I would rather die from side effects of high cholesterol as Renal Failure.

During that time I began developing varicosities in many areas of either veins or capillaries. I have a history of Gilberts but when I told the doctor he said my liver function tests seemed OK. I only showed signs of it when I was ill for some time. This was discovered when my son donated bone marrow for his twin's transplant.

The twin with cancer had developed high bilirubin which they attributed to reaction to his chemo. Then they decided he had contracted hepatitis from his dad. When the other twin showed high bilirubin after donating marrow they determined that was the problem. They assumed it came from me because of the jaundice I exhibited when ill. Is this something others have noticed. Thank you for this site.

Thank you for posting my letter. I am luckier than most people because I show symptoms of reactions to medications much sooner than some of those who have written you. I have Ehlers Danlos and perhaps that is why I show early reactions. I have been aware of many people in the past few years who have been diagnosed with ALS and perhaps you have discovered the reason for that. I had thought it was rare when Lou Gehrig was diagnosed.

I have had reactions to other medications so was not surprised at this one but like one of the other readers wrote, The pamphlet and the physician stated that this reaction of Myalgis and renal problems is rare. I do believe they need to get together and write about their patients who complain of these difficulties, such as Fibromayagia and the other problems, as soon as they note them. I might prevent more severe problems for many people. Thank you again for this site.

13 years ago my husband died of ALS. He died 8 months after being diagnosed. It was heartbreaking to watch his muscles disappear right before my eyes.

About 5 years ago I was prescribed simvastatin because blood tests showed my cholesterol was 260. My LDL was about 140, but my HDL was exceptionally high, and my triglycerides were exceptionally low. I was already on gimfibrasil at this time.

Within 2 days I began having severe muscle cramps and spasms throughout my body, legs, arms, chest, back. Since the simvastatin was the only new drug I was taking, I checked the internet and the first thing that came up was a WARNING to physicians not to prescribe this drug with gimfibrasil, or, if it was felt the benefits would be worth the risk (I would have like to have been informed about this) not to prescribe more than 10 mg. I was taking 40 mg which I consider irresponsibility on the part of the prescribing doctor.

Now 5 years later I am still battling muscle spasms which leave my lower legs and arms numb with a "wooden-like feeling and a soreness in the skin and muscles, although I no longer take statin drugs or gimfibrasil. I have refused to take any cholesterol drugs of any kind.

I found that CoQ10 helped minimally, and my current doctor recommended that I drink tonic water which helped a great deal at first but is not as effective now. I have lowered my cholesterol with diet, and frankly don't care if my cholesterol is a little high as long as I have a high HDL and low triglycerides.

Since my best friend starting taking statins (lipitor then crestor) she is falling apart. Aches, pains. muscle atrophying memory problems and now she has inner trembling and twitches on lip and thumb. She is so afraid of als or parkinsons, she is afraid to go to a doctor.

I am a 77 year old medical doctor who over the past year has been reduced to fulltime use of a walker due to an ALS-like condition associated with the use of the statin drug, Lipitor.

Although FDA does not want to hear this, I know from reviewing these messages on the People's Pharmacy website that there are hundreds more just like me.

I notice than many people and their doctors still remain focused on cholesterol and want to offer my two cents worth of research and experience. My advice is forget your cholesterol. It is irrelevant to the process of atherosclerosis, heart attack and strokes. In my judgment inflammation is the cause and proper treatment should be directed at the inflammatory process that underlies this type of disease.

This is where the CoQ10 and essential fatty acids and other anti-oxidant supplements have their effect. Now we feel our permanent neuropathies, myopathies and these ALS-like problems reflect mitochondrial damage from excess oxidation. This is the reason for their permanence and the reason we focus on mitochondrial maintenance through the use of anti-oxidant and anti-inflammatory supplements. It is the only treatment option available.

First do no harm. That is part of our Hippocratic Oath. Don't you wish the drug companies had followed this Oath when they developed statins?

I was prescribed Crestor in June 2006. My cholesterol was high. I am quadriplegic with incomplete c-6 injury. I walk with loftstrand crutches. I was losing control of bladder, falling several times and losing strength in hands. I finally put the symptoms together by August, 2 months after starting the drug.

My cholesterol went down, from 305-160 in 2 monthhs but couldn't walk or hold my bladder! I have been prescribed simvistatin, it caused pain in muscles and one other with pain, too!

from a rural community in western mn. 3 of us in our early 60,s were diagnosed w/ALS in the last 3 years. we all grew up within 20 miles of each other and were all on the same major statin drug. i am the only one surviving today with what has been and is a living hell! thank GOD for having an extremely good rural D.H.O. who recognized my rhabdomyolisis for what it was w/cpk over 14,000, as i was unconcious when he first saw me. H

I took Simvastatin for 28 months as a precaution against getting high cholesterol - that's what my Dr told me - I was 50yrs old at the time. Within 12 months I had the muscle damage - it was so bad in my right calf I couldn't bear the covers on my bed to touch my legs/toes. Insomnia, morning diarrhea, Sciatica, severe memory loss, chest pains, jaundice, hand tremors, neuropathy in hands/feet/face - was told this was Carpal Tunnel Syndrome?, Arrythmia, grey pallor, tripping, statin shuffle, difficulty swallowing & finding the right word, aged 20 yrs, TGA in Vienna & Texas when on holiday, choroid plexus cysts + much more.

Stopped Statins 11 months ago - muscles improved but am left with neuropathy and memory loss and a very low WBC. I have been left an invalid. Pamela SP England

My mother has just recently been dx with ALS. She was on statins for about two years during which time she experienced muscle weakness, drop foot, and cramping.

She will be going to the Mayo Clinic in Florida in two weeks to get a second opinion. She has been off the statins for about three weeks and has feeling back in the left leg (which was useless) and is able to move her foot somewhat which she could not do before the dx and while on statins. (Crestor and Lipitor)

Interesting to see what the Mayo clinic makes of this improvement after stopping statins, while carrying a dx of ALS.

Starting about two years ago, I took simvastatin daily for about three months in an effort to reverse known but early-stage coronary-artery disease. I discontinued it because of worsening weakness in my hands. Three months later, I agreed to try pravastatin which I took for about 7 months before the symptoms once again worsened. I once again stopped the medication and have not taken any statin drugs since. Nonetheless, my ALS-like symptoms are progressing and spreading. I am current undergoing thorough neurological evaluation. Did the statins serve a a catylist for a pre-existing condition? Were they simply unfortunate coincidences? Were they responsible for my other symptoms? So far, nobody seems to know.

In 2002, I began treatment through a very accomplished endocrinologist for Diabetes II (brought on by Zyprexa), and having brought that into management, began working on lipids and cholesterol. Thus began the cycle of things like Lopid, Tricor, Niaspan, Pravachol, Vytorrin, Zetia, and most recently Crestor. These things gave me three major side effects: trouble sleeping, GI duress, and muscle pain.

Because I am a "good patient" I endured each med as long as I could. The last, Crestor, brought on such severe leg pain that I was sure it was some orthopedic thing that needed to be fixed. Going to the orthopedic doc, he went through physical therapy, x-rays, orthovisc shots into my knee (had a little arthritis there), and finally, an MRI. The MRI showed nothing "medically" wrong that could be causing all of the pain, so basically, the doc said adios. The pain was so severe that he gave me a couple of RX of Vicodin. He did not know who to recommend next.

I went to the gynecologist to see if the pain in those areas could be a problem within my female organs, or even a hernia. I took great care to document everything, as I had been on and off so many cholesterol-related meds and knew that I needed something, most likely, for that problem.

So, my endocrinologist has me off Crestor "for now". My pain has not subsided. I am allowed only over-the-counter pain meds. It is chronic, debilitating pain. I am now taking some CoQ10 per my endo's suggestion. My great fear is that the pain that I have is permanent and I will have to live with this forever. My whole lifestyle has changed. I am now retired, and I cannot even take a nice relaxing walk in my neighborhood. I awake in anguished pain at night. In my attempt to be healthy (i.e. take care of a cholesterol problem) my physical health has taken a downturn.

O my God!

You're all talking about me!

After reading all these comments, bells went off in my head.

I have been taking 20mg Lipitor for 6-7 years. For several years I have had unusual joint and muscular achyness- the kind you feel 1-2 days after an excessive workout. However, I get NO exercise because of all the weakness, joint, tendon and apparently muscle pain, cramps.

My wife gets very weary of me because I don't want to walk, exercise, snowshoe, hike, stand for long or travel like we used to. My wife also comments on how skinny my legs and biceps have gotten. I thought the deterioration was from no exercise-at least that's what she told me.
What has happened to me in the last several years?

In the last year get increasing muscle cramps in the night or towards morning, in the ball and arch of my feet, calf, shin, sometimes hamstring. I feel like there are rocks or marbles in my shoes I have to jump out of bed and stand, walk stretch and literally straighten out my foot to get rid of the cramps. My foot and toes curl forward as if wanting to grasp a tree limb.

When I stand or walk for more than 5 minutes the muscles from my ankles up the back of my legs into my back are throbbing and shaking

My Dr. doesn't know about the most recent symptoms. A while back be tested me for a marker for Rheumatoid Arthritis--negative.

I am 59 Y.O. M in relatively good health. "Former runner, skier, hiker and weightlifter. Now I've gone fat and feel like I'm 90.

I am glad I found this page.

About 10 years ago my husband and I were on a trip to Europe, and a nurse on the trip inquired as to why I had so much trouble walking. I said that I had such muscle pain in my legs. She told me to go to my doctor, upon our return home, and tell him to take me off my statin meds. I did so..in 18 hours after taking the last dose of Zocor I was pain free....in my left leg!! About 6 months later I went off Vioxx, and within 36 hours the pain left my right leg!! This was after complaining to my doctor about leg pain for 4 years!!!

In less than 1-1/2 years on Lipitor, I went from being able to climb the ancient temples at Angkor Wat, Cambodia, to being almost unable to walk to my mailbox.
I felt like I had flu all the time -- aches and pains in my fingers, arms, shoulders, hips, legs and feet. Also I was extraordinarily fatigued.

Fortunately my doctor listened to me and took me off the Lipitor. Four days later, I could move my fingers easily again. I am hoping that I continue to improve, and that there is no permanent damage.
I felt so bad, I had begun to wish for a short life. So, if I have to choose between heart attack (high cholesterol) and Lipitor, I'm going for the heart attack.

I do not believe what the manufacturer says about these Lipitor side effects being "rare." I would bet there are thousands of people suffering these symptoms who write them off as "old age" and do not realize they are taking a medication that is causing their problems.
The doctor said I had an elevated CPK level, indicating inflammation.

I developed an essential tremor after six months on pravastatin. Fortunately, I googled "statin" and "tremor" and found the one might be the cause of the other. When I stopped the statin, the tremor, and the muscle weakness that I hadn't connected to the statin, both disappeared.

3 yrs on simvastatin after heart surgery. I have developed leg cramps at night, mostly lower legs, even feet. Recently stopped statin for two weeks but still had occasional cramping. If not statins, what are other possibilities?

My brother-in-law, age 67, died 6 weeks ago of ALS. He was on Lipitor also. I hope the FDA reads all these comments and start a serious study of those living and those who have passed. Their histories must be studied thoroughly and efficiently by non-biased researchers. Unfortunately, my son's friend has informed him of her father's recent diagnosis of ALS. He also had been taking Lipitor. I am a nurse for 40 years and have only seen 1 case of ALS in my career. Now, in our county, there have been 5 or 6 deaths the past 2 years.

What a confirmation! First Lipitor, a time without it and then Zocor. Both times resulted in horrible cramps in more places than mentioned (rectal, laterally above the heart, and the fingers on both hands). Sore "bones", (arms, ribs legs) which I believe are inflamed fascia, also plantar fasciitis, some possible short term memory loss, occasional trembling in the hands, fatigue, loss of sleep due to severe cramping are all a part of my daily life.

I have a high pain threshold and will not complain though tears can stream down my face from the severity of cramps.

My life, until statin ( at about age 65), has always been unusually healthy, my immune system as far as catching colds, flu or whatever is going around has always been and still is superb. I've led a superwoman life until the Lipitor and Zocor, and went off on the chance they had caused a problem. Though things improved, the smallest amount of caffeinated coffee or good chocolate triggers the return of severe cramps and other symptoms.

An excellent diet, no junk nor soft drinks, I am sure does help.

I would recommend statins to no one on the chance of a similar reaction. And rare, I am willing to bet, Not!

I grow more than 300 roses but find that two or three hours now takes more out of me than ten did.
Personally I believe there is a strong connection to the statins and the poor physical shape I am in--no longer able to do chin up or push ups, stairs are one at a time. What a price to pay for a cholesterol which would not have killed me anyway.

My medical education will not allow me to blame these symptoms on coincidence. Thank goodness my health is such that other medications are unnecessary.
I'll be curious to find how my 15 younger siblings are faring. One was on Zocor and she can hardly walk due to "arthritis'(?) in her knees.

2005 took statins with different kinds and doses because all seemed to cause muscle weakness and joint pain. Stopped for 2 years but LDL went up so started 20mg Lescor. 3 weeks in, muscle pain and old sports injury all reactivated. Irritable and sensitive to cold as well.

I was on Lipitor for about 7 yrs and all of a sudden started having severe muscle cramps in my thighs, like they were in a vise. Very deep pain. I went off the Lipitor, fearing rhabdomyolysis. For the next several weeks, I would have severe spasms in my shoulder and hands. After 3 months, my general physician decided I should try Zocor, and within 3 weeks, the thigh muscle spasms came back.

I went off of Zocor. But by then I started noticing that I was slurring my speech a bit, which got worse as time went on. My legs became very weak, so that I could barely walk into a store to do grocery shopping without using a cart to hold onto. Finally I went to a neurologist who ran all kinds of tests for everything that would cause speech slurring, and all came back normal. I also had MRI's and EMG which were normal. I started working out on a treadmill, and my legs are now stronger so that I can walk.

Now he has decided I have ALS or syndrome-like disease, which I am going to Mayo's soon for second opinion. Hope this can be reversed.

For about 10 years I took 40 mg of Pravachol. Slowly, after about a year of starting the dosage I began having inner body tremors etc., etc., peripheral neuropathy,numbness in my hands and fingers,stiffness in walking like all the reports found on this site. Always thought it was arthritis and old age.

Of course as you all know it was the statin. Too late I took myself off of it, about 2 years ago. My point is to tell you that when my wife developed high cholesterol she was given, by her MD, NIACIN capsules...one a day... at her next blood test her cholesterol was below 200, triglycerides around 75 and HDL and LDL well within desirable limits. In order to check it she stopped taking NIACIN CAPSULES and after the next blood test her cholesterol had risen, her triglicerides were much too high, etc.

So she went back to NIACIN, along with 1000 mg omega 3 capsules and her numbers are now down to a very, very acceptable level. I just wanted to pass that on to some one looking for some thing to take instead of the deadly Statins. Ask your MD about it.

Niacin is over-the counter. Another thing, more and more Doctors agree that there is no proof that statins keep one from having a heart attack. Of course Pharmaceutical companys will deny it. But, hey, everyone is entitled to make a Buck even if it kills people or at best what do they care if people have to finish their lives using a motorized heel chair. I am not in the NIACIN business. I was an Antique Dealer.

I have been trying to take statin drugs for eight years now and in the last five I have lost all muscle tone in my legs. I look like I am five yrs old! Recently my Doctor upped my zocor to 40 mg a day despite my telling him I could hardly handle 20 mg's a day. Now five weeks into 40 mg I can't walk and even going to the grocery store makes my legs ache for hours!

I had almost a completely blocked carotid artery five years ago and now I'm told that I may have a blockage in my heart after a stress test.
What good is taking statins if you can't exercise, the very thing that doctors preach?

I don't know what to do. Keep taking the zocor and just be a couch potato, or stop and maybe feel better and hopefully start walking the cholesterol away.
I am so glad that I came across this site. I was beginning to believe that I had blockages in my legs too even though I had tests that said I don't.

I have been on Lipitor 40 mg for ~20 years, diagnosed Type B hypercholesterolemia. For months I have been experiencing constant muscle fasciculations of feet, calves, thighs. Doctor took me off Lipitor a month ago, no change yet. I am hoping I do not have irreversible damage, and a bit anxious about the cholesterol shooting up again (untreated I can have over 400); diet and exercise don't seem to have any lowering effect.

I am a 48 year old woman. I have been taking Lipitor for 3 years. I have always noticed extreme exhaustion since taking Lipitor but just chalked it up to work and a busy home life. A year ago I started having leg pain and weakness. I do yoga and I started to have difficulty getting through a class and some of the poses that I could do in the past I had to sit out for. My leg pain, weakness, and exhaustion has gotten so bad that getting out of bed is a chore. I Stopped taking Lipitor a week ago and I do feel a slight improvement in my energy level. My legs still have muscle pain and weakness. I am hoping that this improves as well.

I've been taking Vytorin for over 5 years and starting feeling weakness in my right hand and went to the doctor. I'm 60 years old run 6 miles a week and lift weights. I thought i was in the best shape of my life! Doctor sent me to a Neurologist who diagnosed me with ALS.

I took lipitor for about 2yrs and it improved my lipid profile dramatically, but I started to experience vertigo, short-term memory loss, and sudden moments when I realized I didn't know where I was. This usually happened during my drive to and from work-a very familiar route. I did a Web search and found I was not alone with such symptoms. After the symptoms subsided and decided to go back on because my lipid profile was pretty ugly. The symptoms returned within 2 weeks. I've now been off statins for 4-5 years. Being lost in familiar territory is more frightening than a coronary.

I've been on various statins, both brand name and generic, and the only problem I had with them originally was very elevated liver enzymes. I stopped taking them when I lost my medical insurance but when I went to a new doctor a few years ago, he felt that the benefit outweighed the possible harm to my liver and put me on Zocor, then Vytorin and I started having muscle problems.

Once again, I lost my medical insurance, stopped taking the meds and slowly the muscle problems subsided To this day, however, my liver enzymes are elevated and ultrasound showed that I have a fatty liver, a precursor to cirrhosis. I caution all my friends about statins.

It is very sad to read so many people's stories and the impact statins have had. My dad was recently diagnosed with ALS. He had been on statins for a few years. The first appointment with the neurologist he was told to get off the statins. My dad stopped taking Crestor immediately.

Unfortunately, he has muscle wasting and nerve damage. This is a man who is 74, was relatively active (golfing as much as he could, exercising, walking) and now has trouble getting out of his chair.

I keep hoping that the Crestor impact will be reversed, and because I am a believer, am praying for divine intervention. Noticeable symptoms started with slurred speech in December. Some hand weakness, stiffness in knee joints and back. He tripped a couple of times. He was diagnosed in April.

Since stopping the Crestor, knee joints and back no longer hurt. His CPK level was above normal and is now back in the normal range. His cholesterol is holding, though not as low as the Dr's would like to see it. Not sure if the Crestor triggered the ALS, but after reading so many stories, I can't believe it didn't.

These drugs definitely need to be removed from the market. From what I understand the trials were not long enough to report any long-term damage of the testimonies we see on this site today.

After three days on Lipitor I developed a shingles type rash and double vision. My legs were weak. I stopped the medication. It took me three months and a twenty five pound weight loss to recover. I had problems with other statins previously and my doctor thought I should try a low dose of lipitor. I know of two other people who had the same problems with lipitor. I think it should be banned from the market.

I have concerns on the associations between Statins and neuromuscular diseases including ALS, neuropathy, myopathy, bursitis and others. It is difficult to prove the connections because so little interests and researches in the toxicology testing of statins. We need to have better alternative drugs for patients who can not tolerate statins.

My father was put on statins in 2005. Immediately he felt many of the symptoms here (legs numb, confusion, became irritable, developed eye issues, etc). He went back to his doctor, who denied it was the statins. My father stayed on them for 2 years (even though I pointed out the issues I found on the internet). My father believed anonymous posters on the internet are not near as trustworthy as his doctor.

So he ignored my pleas to stop. 2 years later, I printed out 400 pages of research and he finally agreed to stop. At this point he was pretty much disabled. No longer worked out, sat in a chair the entire day. His eyes had chronic dry eye, couldn't look upwards at times, couldn't walk without a cane, shortness of breath, slow to speak and answer, etc.

His doctor now thinks he has PSP (Progressive Supranuclear Palsy) but is not sure. He has been on levadopa and high doses of coq10 (coq10 has really helped him significantly!).

He can no longer drive (got into an accident 4 months ago and totaled his car so figured driving is no longer safe).

This is just awful to see that our doctors can not be trusted...whats worse is this FDA we have. What is going on? Why did the doctor tell my dad he was just getting old (barely 60!) and that his AUTOMATIC symptoms was from age and not the drug. Are they getting paid for all this?

We need to do something. This is very tragic to watch my father go through all this. His dignity has been stripped and he's so difficult to get along with now.

I am a nurse who has been looking after ALS patients for the last 23 years. It's the most devastating and relentless condition that can ever take over a persons body. Two years ago my doctor said I had high cholesterol and had to start Zocor. I did and ever since then I feel less energetic and my legs ache all the time.

I am glad I came across this site I am going to stop Zocor today and hope I haven't done any permanent damage to my muscles.Thank you maybe finding the cause or catalyst for ALS will help us find a cure.

I just posted a comment regarding unexplained femur fractures with Fosamax and found this comment thread. I have been taking Lipitor for four years and now Simvastatin for several months. I have no unusual symptoms that I can think of, but I'm gun shy about side effects in general. What is being done for people with high cholesterol who do not want to take statins?

PEOPLE'S PHARMACY RESPONSE:

Elizabeth,

There are many ways to control risk factors for heart disease besides statins. You can find them in our Guide to Cholesterol and Heart Health and in our book, Best Choices From The People's Pharmacy.

Femur fractures associated with bisphosphonate drugs for osteoporosis are worrisome.

Hi. Read your blog about carpel tunnel in both hands. I have it also -had an EMG done. I'll see a hand Dr. in Sept. I also have stiff feet and sometimes can't curl toes or stand on balls of feet. I take simvastatin and want to take none. For 20 yrs. my cholesterol was 267. I went off simvastatin and on Zetyia because it went up to 240-they put me back on. My body makes it naturally. Any suggestions?

I was surprised to see no mention of myositis as a side effect. After taking two different statins for a year and half, I developed polymyositis. This autoimmune disease causes your body to attack it's own muscles. In my case, I could barely walk or raise my arms. After a host of really ugly drugs (which I still take) I am somewhat normal. There is an acknowledged link between satins and myositis diseases. Beware!

Have borderline high cholesterol, and was prescribed Zetia, to no benefit, then Lipitor. After less than a year, found increasing weakness in legs and arms. Since I experienced no pain, my doc felt that the statin drug did not cause the problem. Had neurological testing, inconclusive, and decided on my own to discontinue Lipitor.
Am gradually regaining strength in my limbs, but have not recovered completely. Could not tolerate niacin, so am going the steel-cut oats route for breakfasts, which is lowering my cholesterol slightly. Expect my doc to insist on returning to a statin, but I will continue to search for alternative. Thanks for your good work!

It seems the medical profession is tied to the drug industry in most cases. You definitely need coq10 for the heart. This provides energy so the heart can pump properly. Statin drugs rob you of this. The big question is.. Does an elevated ldl cholesterol cause plaque to form in the arteries in the first place? There are a lot of people with heart problems with low or regular ldl levels. I went off liptor in favour coq10 and omega 3 and vitamin c and e. I feel 100% better with tons of energy. So the docs will not scare me off this.

This is in regard to ALS, though not statins. A few years ago I was experiencing severe autoimmune problems (autoimmune disorders run in my family). My doctor ruled out some conditions such as lupus, but was uncertain as to what exact problem to diagnose me with.

My hands started to "not work" well. I could barely hold a steering well and my thumbs were particularly starting to become useless. In a conversation with my aunt, she described almost identical problems with her hands (though she did not have all the other disabling symptoms that I was experiencing).

Fortunately, by coincidence,I started taking a low-dose antibiotic for a gum infection caused by a botched crown procedure. I was on this antibiotic (it was called perio-something...perhaps periostat?) for 18 months. My autoimmune problems eventually vanished. I did not associate this with the antibiotic initially, but my research since then has led me to believe it played a key role.

I found NIH research indicating antibiotics may be extremely helpful against ALS (there was a mouse study and I believe a human study is now ongoing). My aunt was eventually diagnosed with ALS and soon died from the disease. Whether I was exhibiting some initial symptoms of ALS or a related disease, I thank my lucky stars for that antibiotic treatment. (Interestingly, I was on antibiotics for almost 15 years to treat acne...when I stopped treatment, I developed asthma, another autoimmune illness.)

I am sixty years old, and in excellent overall health with no history of heart disease - or any disease. Because I tested with high cholesterol on ONE blood test, my doctor immediately put me on Lipitor. I wanted to try diet and exercise first, but she negated that idea. Over the course of two years on Lipitor I developed terrible pains in my wrists, thumbs, feet, and legs. Then my eyebrows, eyelashes, and head hair began to fall out. The hair follicles just dissolved, and took on a soft, fuzzy appearance like cat fur. I also got increasingly "spacey" and started forgetting words and names.

My doctor refused to accept that Lipitor was the cause of any of this. I know this may sound arrogant, but I simply quit taking it. I have now been completely "Lipitor free" since June. My hair and eyelashes have grown back, and ALL muscle and joint pain is gone. My memory is also back to normal.

In my opinion Lipitor is a DANGEROUS drug, especially since medical doctors seem to be pushing it on people, then refusing to accept that it is causing serious side-effects. I'm returning to a more natural style of health care - diet, exercise, vitamins. If I die from "lack of Lipitor," at least I'll have a full head of hair!

i have als and i have been using crestor for 15 months before my diagnostic.i am very impressed by the high number of comments. i would like to see the graph of number of als victims versus the date and the beginning of lipitor and crestor???

unfortunatly i don`t have the data...and pharmaceutical companies have billion$$ to spend to say the contrary..as doctors receives gift to prescribe it...there is not a lot of solutions....

My MD prescribed Lipitor for me about a decade ago. In the first week my lovely wife and I noticed such side effects as memory loss and quit using the drug. I haven't died, yet.

I am 69 years old with PTSD and it's consequences because of my service in Vietnam. I have been on Zocor since 1998. Started with 5mg, to 10mg, to 20mg, to 40mg, and finally to 80mg in 2007.

But my HDL started to drop (44 to 34). Switched to 20mg of Crestor in September 2008. October 14th, 2008 started 40mg of Crestor.Twenty-three days later(Nov.7th), lost total muscle control including my bladder. Basically could not function for 3 days. I called it total muscle fatigue. By 4th day, I was very sore but mobile. In time,
soreness went away, but don't believe I have ever gotten back my balance and dexterity. Did not take any statins for 2 months.

Total shot up from 181 to 329. Returned to Zocor 40mg, 8 weeks later to 80mg. Presently on 80mg Zocorand 1000mg of prescription Niacin (thru VA).My last readings were 178 Total,105 LDL,30 Hdl,116TRI.

I started taking Statins in 2000. Last year my symptoms of muscle pain and foot spasms became unbearable. I was also experiencing powerful random kicking sensations in the heart while exercising. Prior to that I had been running regularly but a year after starting the statins started spraining my left ankle and never seemed to heal properly. I went off statins and the spasms stopped and the pain much reduced. The ankle healed within 3 months.

However I am experiencing odd symptoms which seem to be gradually increasing in my left leg. There is mild "jumping" of muscles and in the morning the left calf seems to be stiff with odd "pins and needles" sensations just under the skin while stretching.

Could this have been an underlying condition or could it have been brought on by the statins?

My Dad had been on low dose of Zocor for years. In 2008 he had a heart attack which resulted in bypass surgery. After the surgery his Zocor was increased to 80mg. Several months after the increase he starting experiencing fatigue and back pain. A year and half later the muscles in his hand started to atrophy to which the neurologist said it was a nerve around his elbow that might require surgery.

He started have problems with his throat, weak voice, cramping in calf, shortness of breath, extreme weakness and weight loss. He stopped taking the Zocor. He as been off the Zocor for about a month without any improvement. We has gone back to the neurologist and has been given a diagnosis of ALS. Was this caused by the Zocor? Will it continue to progress since the statin drug has been removed? Would this have occurred without statin drugs? I hope and pray that the disease does not progress and that a heart attack will take him before ALS.

Perfectly healthy at age 57-diagnosed with carotid artery blockage 90% left side and 45% right side. Have determined it is hereditary. After surgery on left side Dr prescribed beta blockers (which I wouldn't take) and simvastatin 40 mg. First symptoms were foggy brain and then inability to come up with words. Stopped for 10 days and symptoms went away. Cut dose in half and tried again. Now having same symptoms along with muscle aches, some tingling, and some balance problems. Began to feel like an old woman - hard time getting up from chair or off the floor. Stopped again last week and symptoms are diminishing. Won't go back on statins again.

This is simply amazing as you read these hundreds of comments! ALS is such a rare disease, yet I lost count of the above comments where people experienced statin side effects such as muscle cramps, pain, weakness and nerve problems, and eventually were diagnosed with ALS.

How many people have already died from statin triggered ALS like deterioration, that will never be included in any reports to the FDA?

I was on Lipitor and then simvastatin (80mg) for 2 1/2 years, and eventually discovered how the statins were turning me into a 50 year old cripple who could barely get up or walk after sleeping or sitting or driving the car. Much of my lost vigor and cognitive function has returned in the 2 months since I stopped, but effects linger, and I fear for the future. This statin damage crisis may be the greatest preventable health tragedy in history. Profits have so corrupted the whole process of research and treatment, to the great harm of people, that it breaks my heart.

I was started on simvastatin 6 months ago at 10 mg at bedtime because my cholesterol was over 300. Cholesterol dropped to 260 but the Doctor prescribed simvastatin at 20 mg at bedtime. I started having leg cramps 3 hours after taking my medication. The cramps were severe enough to have to get out of bed and walk for an hour to gain control of my legs.

Then I started having pain in my right shoulder strong enough to take OTC pain medication to sleep. Now I am tired all day, taking long naps and I can't walk farther than 1/8 mile. I am only 65 and I feel 85. After googling statins and side effects, I have learned enough to tell my Dr.

I am going off statins and I am willing to try anything else. A heart attack is better than dying by strong pain and cramps and loss of quality of life. Thanks for this web site and many others to convince me that statins are not the way to go. I take multi-vitiamins and no other prescribed medications. I am interested in any other ways to lower cholesterol?

My doctor has me on Pravastatin (40mg. once a day) and Lopid (600mg. twice a day). I have been on the statin about 6 months and the Lopid about a month.
I have developed some muscular aches and in particular a "stabbing" pain in my right side at my waist. Sometimes it will move around to my back. I mentioned this to the Dr. and he sent me for an ultrasound on my gallbladder, ovaries, and kidneys; nothing was found out of the ordinary.

I asked my Dr. about the side effects of the meds and he said they would not be causing the aches and pains. My total cholesterol has actually come down to a reasonable level but my liver enzymes are up. I had hepatitis in the 1970's and he knows this. He still insists on my taking the meds. I am tempted to stop them and take my chances with the cholesterol; I believe I could control it with diet and exercise.

I am terrified of the ALS symptoms after reading the posts above. My question is: Can I go "cold turkey" off the meds or should they be stopped gradually? Thanks for any help out there!

I was having lunch last week with a friend who was diagnosed with ALS in 2006. Yes, he had taken statins. I mentioned that my Dr. increased my Lipitor from 20mg to 40 mg. He and his wife suggested that I read the articles linking statin use to ALS. At first I blew it off, but now that I have read the above comments, I plan on stopping the drug now.

Though I haven't had many leg cramps, I do have Achilles Tendonitis in both heals, occasional numbness and tingling in my fingers, fatigue and weight gain, and painful joints in my fingers. At age 54, I feel much older.

I have known of 3 people within 1 mile of my home who have had ALS. Sadly, 2 have passed away. Doesn't sound so rare to me. Has the number of cases increased with the discovery of statins? Hmmm...

Was put on Lipitor for moderately high cholesterol. A very active mid-70's female, I noticed extreme weakness in my arms and legs after less than a year after starting the drug. My doctor did not think this was caused by the statin, since I experienced no pain. After hearing several tv ads warning of weakness, I stopped the Lipitor.
Have regained much, though not all of my former muscle tone.

I started taking (Lipitor) in March of 2000 because of elevated cholesterol. Within a few weeks, while in Disneyworld, my leg pain was so excruciating I could barely walk. My doctor said my liver enzymes would be elevated if the Lipitor was the culprit...thus began the fibromyalgis journey.

For 9 years I have lived on massive doses of Aleve and ibuprofen to manage the pain enough to work. Finally, one weekend this June the pain was so bad I thought I must have a deep clot in the left leg. I went to the ER and the ultrasound showed nothing.

The following Monday I saw my doctor and he said...Stop the simvastatin (the last one he prescirbed!) I couldn't believe it. He said he heard this story over and over from other patients and it's the statin causing it.

I quit....within 1 week my legs were so much better. The 2nd week we went on vacation and I was able to keep up with my family and did not have the chronic problem of pain and extreme swelling in my legs.

It's been 3 months since I stopped the simvastatin and my cholesterol is back up to 286. The doc wants to give me some free samples of Crestor to get it back down. I'm not going to do it. I am going to stay active, take vitamins, fish oil, and enjoy my life. I may have a heart attack or stroke. I hope not, but my grandmothers both lived well into their 90's and were never treated for their high cholesterol numbers.

You sound just like me. Three years ago I was diagnosed with Rheumatoid arthritus, then Fibromyalsia, the Jsorgrens syndrome and who knows what else. I have gained over 30 lbs with the Prednisone. Embreal, Humera, Plavesacque, methotrexate, Zocor,should I say more? Now my doctor (reg Dr who probably is the most concerned of all) took me off the Zocor for a few weeks to see how I feel.

I have even been to a neurologist to make sure the is in MD derivative. I am very frustrated to say the least and need someone to understand. In the morning my hands are swollen, my feet are almost un-walkable and people tell me I need to "exercise." I can just barely get up let alone exercise. I watch my weight and instead of losing I gain. If you can give me any words of wisdom please do. Thanks

My Mom was told by her neurologist that she had "probable ALS" after 15 years on statin drugs. I came across one of these forums where everyone was discussing ALS symptoms caused by statin drugs. I mentioned this to my Mom. She went off her statins and within 10 days was feeling so much better and much more mobile without muscle pains and aches.

She still has the foot drop and probably always will. She can live with that knowing she doesn't have ALS. When I mentioned to her neurologist what she had done and how much better she was feeling he said she doesn't have ALS but statin myopathy.

We just have to educate her on healthy eating habits to lower the cholesterol.

I was a very active 55 yr. old. I lifted weights, walked/ran 6 days a week and refereed 3 games a day 5 days a week. After a physical, I was told that I had a very high cholesterol count. I tried a natural approach with niacin pills, oatmeal, fish oils, etc. Unfortunately, they didn't work and was put on Crestor. After 4-5 months, I developed foot drop and weakness in my left leg, 6 months later, I was diagnosed with ALS.

Prior to this diagnosis, I saw several doctors, spoke to my primary physician and on several occasions asked about Crestor as I read that statins could cause muscle weakness. I have to believe that the statins in this drug triggered/caused the ALS. How else could a very healthy, active male that ate a healthy diet and lived a healthy life suddenly have this disease? To me, it all points to Crestor.

I hope the FDA will continue to track the incidence of ALS and statin drugs. My hope is that the study will not be influenced by the drug companies that profit from statin drugs that is prescribed to millions of people.

John,
Interesting post. You might find it interesting, what I found in my statin research after my own statin damage experience. I believe it was in Dr. Graveline's book "The Statin Damage Crisis".

It appears that there may be a correlation between how active a person is, and how the statin damage progresses. People such as professional athletes, quickly notice their decline in performance etc. It seems the muscle damage becomes more noticeable in those in peak physical shape vs. the inactive.

When my statin damage became clear, I could not even go golfing the next day, if I had mowed the lawn and did some minor yard work the day before.

Dr. Graveline also noted that as his ALS diagnosis became more likely, his attempts at exercise actually seemed to hasten the damage and deterioration.

Early on, before I was aware of what the statin was doing to me, I had to discontinue my kettlebell exercise, and bike riding. My muscles quit growing and began to decline, even before I had to stop my routine. I had to stop because even with very light workouts I was experiencing joint/ligament/muscle damage that would not easily heal.

This area of statin damage research certainly warrants more investigation.

I have developed slurred speech and cramping in my Jaw Bone and tongue. It started out with severe cramping in my thighs. My doctor took a blood test and discovered that my CPK was in the 5000 range after taking Lipitor for about one and half years. The symptoms persist. I made the connection to Lipitor almost immediately.

There is no doubt in my mind that the Lipitor is the culprit. I have been seeing a Neurologist who wants to diagnose me with ALS based on the issues with my throat muscle weakness/paralyzed vocal cord. The doctors refuse to believe that Lipitor has anything to do with my problem.

I have become so frustrated with this situation that I want to scream. The medical community must be more responsible for the drugs they dispense to the public. Also, we must be more vocal and stand up to these ignorant people.

Federal health advisers said on December 15, 2009 that expanded use of Crestor can benefit patients with normal cholesterol levels by preventing heart attack, stroke and death. An FDA panel of experts voted 12-4 with one abstention that Crestor's benefits outweigh its risks in patients with normal cholesterol and no history of heart disease, setting the stage for a dramatic expansion of a drug that is already a blockbuster.

The FDA is not required to follow the panel's advice, but it usually does. A decision is expected in the first quarter of 2010. A favorable ruling would allow AstraZeneca to market Crestor to more than 6.5 million new patients who traditionally have not been candidates for cholesterol-lowering drugs. The company based its request on the JUPITER study published in 2008, which showed a 44 percent reduction in heart problems among patients with normal cholesterol levels.

All the patients had elevated levels of C-reactive protein, a key indicator of inflammation that can lead to atherosclerosis, heart attack or stroke. Scientists are still unsure whether the favorable results were due to lower cholesterol, lower C-reactive protein, or both, since Crestor reduces both.

AstraZeneca said they would focus on marketing Crestor to patients with health issues that put them at increased risk of heart problems, such as smoking or family history of hypertension. "Our goal is not to be treating very low-risk patients because in that setting the benefits might not be enough to outweigh the risks," said Howard Hutchinson, AstraZeneca's chief medical officer.

According to The ALS Association: "Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time." (http://www.alsa.org/als/who.cfm).

About 10% of the adult U.S. population takes statins.

So, lets do some math:

10% of 5,600 is 560. 10% of 30,000 is 3,000. So one would expect (assuming - for the sake of argument - a neutral effect on statins on ALS risk) that there would be about 560 new cases of ALS per year among statin users in the U.S., and at least 3,000 Americans with ALS at any given time who are (or were) statin users. So anecdotal reports of people on statins who get ALS are not surprising (are expected actually), but do not establish a causal relationship.

To date there is no statistical evidence that statin users have a higher incidence of ALS than nonusers. For example, a 2008 analysis by the FDA of data from over 40 clinical trials did not show a link between statins and increased risk of ALS. Reference: http://www.medicalnewstoday.com/articles/123519.php
Article Date: 30 Sep 2008

Should researchers continue to look for a link? Probably. Should we let assumptions and emotions lead to unjustified mass public hysteria about a class of drug with a 400 to 1 benefit to risk ratio? Certainly not.

PEOPLE'S PHARMACY RESPONSE: WHILE THERE IS NO STATISTICAL EVIDENCE THAT STATINS CAUSE ALS, THERE IS EVIDENCE FROM EUROPEAN STUDIES THAT PEOPLE WITH ALS DETERIORATE FASTER IF THEY TAKE STATINS.

I am an Indianapolis emergency physician who had taken Zocor for 7 years. Over the past two years I had developed foot, ankle and lower leg weakness that I thought was related to my lumbar disc disease.

After a couple of MRI's and advice from both neurosurgery and neurology that it was not my back disease, I had nerve conduction studies done 6 weeks ago. I had developed a dramatic neuropathy of both the upper and lower extremities. All studies that might answer the etiology have come back normal. This is a relative new adverse effect of the statin drugs like Zocor.


So my advice is this: although the statin drugs have been well known to cause myopathies (muscle weakness/injury), do not assume that your weakness is all related to muscle problems. The nerves may well be involved as well, or as the only derangement.

Stop your statin drug when any symptoms of muscle pain, weakness, numbness, balance issues, falls, foot drops or loss of coordination occur. I encountered all of these adverse effects.

I have also started CoQ10 and multiple antioxidants.

++++++++

Yes, you certainly may post my comments. My neurologist here in Indy (highly regarded) is convinced that
statins do cause neuropathy.

I am an Indianapolis emergency physician who had taken Zocor for 7 years. Over the past two years I had developed foot, ankle and lower leg weakness that I thought was related to my lumbar disc disease.

After a couple of MRI's and advice from both neurosurgery and neurology that it was not my back disease, I had nerve conduction studies done 6 weeks ago. I had developed a dramatic neuropathy of both the upper and lower extremities. All studies that might answer the etiology have come back normal. This is a relative new adverse effect of the statin drugs like Zocor.

So my advice is this: although the statin drugs have been well known to cause myopathies (muscle weakness/injury), do not assume that your weakness is all related to muscle problems. The nerves may well be involved as well, or as the only derangement.

Stop your statin drug when any symptoms of muscle pain, weakness, numbness, balance issues, falls, foot drops or loss of coordination occur. I encountered all of these adverse effects.

I have also started CoQ10 and multiple antioxidants.

CF, MD

Although I agree with your recommendations completely, it appears that MDA, MD who keeps posting to this forum, feels that assessments such as yours are a part of "mass public hysteria" due to "assumptions and emotions." Be prepared for him to post more studies and statistics which are more important than any personal experience you have been through.

Any neurologists who are seeing the link between statins and nerve damage carry no weight with him either.

CF, MD:

Thanks for sharing your experience.

There are enough anecdotal stories and case reports to be cause for concern. Research to better identify patients at risk for statin neuropathy and to evaluate management strategies for statin-related neuropathy is warranted. One patient with severe neuropathy from a preventable cause is one too many. But how common is statin-induced neuropathy? According to the best references I can find it is very rare.

Two excellent references on the overall benefit vs. risk of statins (both from 2006):

Am J Cardiol. 2006 Apr 17;97(8A):52C-60C. Statin safety: a systematic review. Law M, Rudnicka AR. http://www.ncbi.nlm.nih.gov/pubmed/16581329?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=3&log$=relatedreviews&logdbfrom=pubmed. They state: "Evidence from 4 cohort studies and case reports suggests that statins cause peripheral neuropathy, but the attributable risk is small (12 per 100,000 person-years)."

Am J Cardiol. 2006 Apr 17;97(8A):95C-97C. Benefit versus risk in statin treatment. Guyton JR.

Dr Guyton is an endocrinologist at Duke (http://www.dukehealth.org/physicians/john_r_guyton) and is the source of the 400:1 benefit to risk ratio I have quoted, with his permission.

Are readers of this site aware of any placebo-controlled prospective randomized controlled trials addressing the relative risk of neuropathies in statin-users vs. non-statin users other than those referenced in the articles above? Why was there no increased risk of neuropathy in the major cardiovascular outcomes trials (e.g. JUPITER) involving tens of thousands of patients? Might there be a vast conspiracy involving not only the pharma companies but hundreds of physicians and scientists at academic centers and at the FDA to suppress "the truth" that should be evident from these randomized controlled trials?

My point has never been that statins cause no adverse effects. Clearly they do. All drugs do. I applaud ongoing objective efforts to apply the scientific method to further clarifying those risks so as to minimize harm to our patients. Indeed, our primary duty as physicians is to continually assess benefit vs. risk of all we do, and to translate that into meaningful and proper advice for our individual patients. That is precisely why it is so distressing for me to see (as a practicing clinical endocrinologist for 25 years) that for every patient with a true or likely adverse reaction to a statin, there are scores (if not hundreds) of patients who refuse to even try statins, or insist on remaining off statins after experiencing symptoms that were almost certainly coincidental to their statin use.

Some people cannot take statins. I have never said otherwise. But millions of people who should be on statins for cardiovascular risk reduction are not due to fears that are way out of proportion to their individual benefit to risk ratio. Internet blogs filled with anecdotal experiences and selective and often faulty perceptions of cause and effect, do indeed contribute to the "mass public hysteria" point I have tried to make. Yes, it's a statistical argument; and statistics have known limitations; and individuals are not statistics. I get all that. I'm just a voice of reason pleading that the baby not get thrown out with the bathwater.

CF, I am glad you are doing better and wish you all the best in your continued recovery.

MDA MD,

From what I have seen of the extreme drive for profits on the part of big pharma, and those others who stand to profit, concern for the patient is certainly NOT the bottom line, PROFITS ARE!

They have purposely hidden things they knew about relating to statins, right from the beginning. When Merk got a patent for a statin containing CoQ10, because of the known statin inhibition of CoQ10 (which is VITAL to the body functions in many ways), why did they never produce it? Was this out of concern for the patient? Hardly.

The drug companies would have everyone from your 98 year old grandmother to your 5 year old child on statins if they could get away with it. All the severe side effects would then be brushed aside as a necessary evil for the common good. After all, look at all those children who can be saved from heart disease!

Just as the cigarette companies marshaled studies and experts (not so long ago!) to show the health benefits of smoking (I remember commercials with medical experts in white coats.), they sought ever broader and new markets for their products. Big Pharma is no different. I am reminded of the traveling hucksters of old hawking their elixirs from small town to small town. The sales pitches of big pharma are so similar, just on a much grander scale.

It is not to say that the industry has not done good over the years, but its credibility with me is fading very fast. Like the corruption in our economic system, profit motives have overridden, eclipsed much of the good done in the past. For me it is a sad state of affairs.

Sincerely,

JM

MDA MD,

After meditating on your recent reply to CF MD, over lunch, (probably not good for digestion or my heart condition), I find myself getting a bit steamed again, as I felt in past exchanges with you on another part of The People's Pharmacy site.

Here's my problem with your approach. Your very first comment was an aggressive attack on this site as a cause for people making wrong medical choices, because of the unwarranted "mass public hysteria" being whipped up.

Are you aware of the internationally respected principle of informed consent? Of course you are. Somehow you feel people are mostly unable to weigh the risks/benefits if they are informed. The Graedon's site is very cautious and even edits out some of the more emotive comments, or one's they feel give medical advice which may cause harm. They don't want the site to degenerate into a more extreme place for Big Pharma bashing etc. And I respect them for that. Their site has HELPED, not harmed the health of many, by helping them to be fully informed. Most of us are grownups, and have a reasonable grasp on reality, able to make informed medical choices. Perhaps more than you think, of the people you have encountered who want to stay off their statin after experiencing side effects, have actually experienced real side effects?

On the other thread, you even seemed to resent the warning given in commercials about muscle pain and weakness being a possible indication of a "serous but rare side effect." (As you expressed concern that this was scaring people off statins.) Maybe that warning should be kept off TV to keep down the "mass public hysteria"?

I'll have you know that it was specifically that warning that probably SAVED MY LIFE! I had been so unsuspecting of my rapidly deteriorating condition being due to my statin, because of the 'statins are safe' mantra that is repeated over and over. I only slightly remembered hearing something about muscle pain and weakness. Could the fact that I, being a previously healthy and active 50 year old, who could not play golf if I mowed the lawn, who could not get up after sitting, without great difficulty, who could no longer properly negotiate the stairs, who could not finish my thoughts, who could barely concentrate to read, who felt they were almost done, finished; actually be experiencing statin effects? I found out I was. Tests revealed muscle damage, and I may have been near to the point where the damage can lead to kidney failure and death.

I still am not completely better since coming off the statin in July this year, but I am almost back to normal. Some damage may be permanent.

MDA MD, I fear in your ideal world, People's Pharmacy would not exist, and drug side effect warnings would be severely limited. People like me would be left in the dark.......and then what? I am extremely grateful to People's Pharmacy and others who fully respect people's right to informed consent, and dignify people by crediting them the ability to make informed medical decisions.

Sincerely,

JM

I have been on Pravacol for years. I am 69 years old, and except for being overweight :( am in relatively good health. I am a two-time breast cancer survivor and had radical nephrectomy for kidney cancer February 2009 -- am on no treatments.
Back to the Pravacol! I am having increasing difficulty with "arthritis" in my feet and knees, but my biggest complaint is fatigue -- I am so tired all the time. After all the reading, am wondering if it could be the Pravacol?

My numbers are good, but of course one is terrified that if the drug is discontinued you will have a stroke or heart attack. Am wondering about cinnamon and niacin rather than a statin?

The information given here on the side effects of statins is very valuable to all people. We all need to be more aware of what we put into our bodies. Everything we ingest affects us and our quality of life. Information is the key to making better decisions for our own health, as we are ultimately the ones that make those daily decisions.

I am profoundly thankful for the information given by the folks trying the alternatives to pharmaceutical intervention for cholesterol, triglyceride and even high blood pressure problems. In many cases of poor health, the conditions have taken years to develop to symptomatic stage. Perhaps as we become more aware of the dangers of straying from the natural food that has been given to us on this planet, we will make better choices.

I applaud all of you at People's Pharmacy and all who have written on this site for your input. Thank you.

If you have all this trouble with statins and their side effects, would it not stand to
reason to get the Cholesterol Report from the Peoples Pharmacy and try to control your cholesterol with diet and phytosterols?

There is soooo much info out on these side effects. Every drug has side effects and then you need another pill to "correct" those.

I am 70 yrs now and do not take any drugs other than a couple of aspirin when I get a headache from MSG (mostly when friends or restaurants cook with bouillon cubes and seasonings with MSG hidden in it) or from lunch meats/bacon.

I use Voltaren cream for backaches which is now available by prescription in the US (readily available in Germany and Latin America in pharmacies without a prescription).

Your body will tell you which foods it can handle
you just have to tune in.

Sheila, I think you mean "GLUTEN FREE DIET' not glutamine-free diet, big difference.
Gluten free means wheat, rye, barley free which have gluten in them.

I was on Pravastatin (generic for Pravachol) and developed pains all over where I had none before. I have read most of these posts about the muscular pains that statins can cause and I asked my pharmacist about this also. She said that the statins can indeed cause the muscles to "waste away"; I stopped the Pravastatin about a month ago and I feel much better, only a few lingering pains now and again (and I'm 65 so those are to be expected).

Feb 4/2010
I had heart surgery in Jan 03 and left hospital on Lipitor. In May 06 my blood tests were a source of concern for my dr. and he took me off of Lipitor then.

The weakness continued, till on Aug 7 I ended up in i.c.u. and was hospitalized for 10 days with a CPK reading of 14,000. I was told told I had rhabdomyolysis. A biopsy sent to Mayo Clinic came back with positive results for statin poisoning.

I continued treatment w/methotrexate, coQ10, and many other drugs and supplements. I have now lowered my CPK to 5200.

The pain continues. Both legs and my right hand have neuropathy. My muscle control is significantly affected, and my left eye lid droops. All that gets worse as I tire which is very easy. My short term memory is terrible.

Dry eye and mouth is much worse at nite. Very seldom do I get more than 1.5hr. sleep. The monster seems to rest on occasion and then worsen for months and then go into semi-remission. My CPK varies from 3000-7000. We do not at this point end up outside those parameters. howard d

Amen!!! Someone finally see's a connection between ALS and Statins. My father had a heart attach at 46 and was put on statins for high cholesterol. He had a family history of heart trouble and high cholesterol. He had problems with the medication and they changed it several times. After taking statins for 15 years he was diasnosed with ALS.

He had slurring speech and trouble eating, which the doctor believed was related to his heart condition. He died at 61 ... 9 months after being diagnosed. If only we had been informed of this link we could have taken him off the statins, at least it could have been a choice. If you ask anyone that has been though ALS they would say the benefits of taking Statins does not out weigh the risk. I too at age 47 have high cholesterol and I will never take a statin, my choice will be a life choice and I will watch what I eat and exercise regularly.

I have my cholesterol checked often each time the Doctor says you need to take medication... I have lowed mine from 245 to 201 by diet. My father had a heart attack early in life but was released with a clean bill of health. ALS is a very rare disease, It is not something he should have been diagnosed with.

In October 2008, my cardiologist prescribed Zocor to treat my moderately high cholesterol. By the end of November, I had to take Vicodin for severe muscle pain; even small efforts like getting out of bed were extremely painful. I decided to stop taking Zocor, and the muscle pain decreased over time.

In late January 2009, my cardiologist strongly urged me to take another Statin drug; he had me take CoQ10 for two weeks before starting Lipitor, saying that CoQ10 would help with the muscle pain while my body adjusted to Lipitor. I started taking Lipitor in February. Also, in February 2009, I had a stent placed in my right coronary artery. Shortly after the surgery (late March or early April), I started noticing that I sometimes slurred a few words when I talked, and I “ran out of air” after only a few words; I had to take short “catch-up” breaths to finish sentences. I was also choking on food and medications.

I told my cardiologist about these problems in April, but he didn’t seem to be concerned. By June, my speech, choking and breathing had worsened considerably, and the cardiologist ordered a CT brain scan. The brain scan was negative for any signs of a stroke or other abnormalities. I was referred to a neurologist.

Before I could get an appointment with a neurologist, I needed to see my primary care provider (in August 2009). She heard the raspiness in my voice, and suspected Parkinson’s Disease. She ordered a video esophagram and evaluation by a speech pathologist. She also told me to see a neurologist.

The esophagram and speech evaluation revealed “extremely weak throat and tongue muscles.” In early September, a neurologist saw me. He reviewed my earlier tests, and without saying much, he ordered an MRI of the brain (with contrast). He commented that I had “extremely weak muscles, overall.” (At this point, knowing that Statin drugs often cause muscle weakness plus knowing my experience with Zocor, I quit taking Lipitor.)

At a follow-up appointment two weeks later, the neurologist announced that the MRI showed that I had had “multiple small strokes.” He would not elaborate nor would he answer any of my questions. At that time he conducted a nerve conduction velocity test and an electromyogram. Neither of these tests showed any abnormalities except mild carpal tunnel syndrome. At this point, I decided that I needed to take a medical leave from my job to pursue treatment(s) and to deal with what I’d just heard.

Because that neurologist wouldn’t answer my questions and because he would have let me leave the office with an untreated subdermal hematoma (from the electromyogram ), I saw another neurologist. He reviewed my tests (including the MRI), and announced “The good news is your MRI does not show any signs of a tumor or a stroke.” He went on to say that there were “white spots on my brain that indicated nerve die-off.” He ordered a cervical MRI, but has not shared the results with me despite three phone requests for information. He wants to do a spinal tap to test for ALS (Lou Gehrig’s Disease), but I have not consented because speech problems and weak muscles are the only symptoms I have.

When I decided to leave work, I began working with a speech pathologist/therapist. She discovered that my soft palate has drooped. This condition causes too much air to escape when I talk. She said that I needed a palatal lift, and to see a dentist to have one made. I could not find a dentist who even knew what I was talking about so my primary care provider sent me to an ENT. He used an endoscope and verified the speech pathologist’s diagnosis. He referred me to a prosthodontist.

I recently was seen by the prosthodontist. He confirmed that my palate has drooped and that it is flaccid. The palate and throat muscles are not working together as they should and that causes problems in speaking as well as problems with “running out of air.” He also said that the weakness is “extremely rare.” He has made a palatal lift which I am trying to learn to use. If I cannot use it, then the only treatment available is surgical removal of the soft palate and a different type of prosthesis. I am not at all sure that I want to take this irreversible step.

I question whether the thought of a stroke, Parkinson’s disease, or ALS has merit because some of my earlier symptoms have been decreased since I quit taking Lipitor.

None of my doctors will even consider the possibility that a Statin drug caused my condition. However, it is well documented that Statins have been tied to muscle weakness. It is less documented (but documented, nonetheless) that Statins have been suspected in cases where patients exhibited “ALS-like symptoms.” Statins have also been associated with slurred speech. I am regaining some muscle strength, but I think the damage to my palate and throat muscles is permanent. I also think that CoQ10 masked what was going on with my body and allowed the damage to go undetected. I further believe that the FDA needs to take a good look at the research that has been done, and take these harmful drugs off the market.

Hi I see this was a long time ago, I wondered what has happened since.

Last year my mother was diagnosed with ALS. At first we refused to believe but unfortunately muscle atrophy is slowly spreading. Now we are trying different detoxification programs. Thinking abut the reason for her ilness she told me today that it might be connected to Simvastin drug that was prescribed to her in order to lower cholesterol level.

I imediatelly Googled the drug and first article showed me that company that is producing the drug was forced, four years ago, to pay compensation to the patients in UK because of this. My research than showed me this forum, that we can see clearly the link between statins and ALS.

All this that is happening with pharmaceutical companies is so disturbing that I can not believe that no one is in a position to control what they are doing. Some countries can prevent things like this and some can not and I would invite you to send letter to the UN and Permanent Missions of UN member states to initiate the action that will regulate issues related to public health.

At the moment UN are very involved in different aspects of life (development, disarmament, human rights) but there is only one resolution that treats the issue of public health and it is quite general. We need stronger action and we should request that kind of action not only from US, Japan or Egypt diplomats but from all UN member states. In order to do that here is the link to adress book of all UN member states with their fax numbers and emails: http://www.un.int/protocol/bluebook.html

Lets do something against the Sheriff of Nottingham.

I am an active 50 year old employed as a fire-fighter. My mother was diagnosed with HC and at 60 died from the effects of a stroke. Because of this and the untimely death of my twin of 48, I got myself tested. My GP found I also had HC so I was put on Simvistatins. This drastically reduced my readings but muscle pain problems prompted me to visit the GP.

He put me on a much lower dose of Lipitor (10mg). Although I tolerate these much better, I have found muscle burn sets in very fast. Our Fire-fighter medical Assessment use's the Harvard Step Test. In two minutes after 30 steps a minute on a 46cm step, my legs just lock up through pain. Oddly, I am not gasping for breath. I've got plenty in the tank as far as energy goes, it's the pain that stops me.
Does anyone know if this is a known side effect of Lipitor?

John Sheerin,

You stopped taking your statin right?

55 year old female teacher. Put on Sivastatin 12 months ago due to high cholesterol reading. Used to be a sports teacher. Last summer developed a low ache in the small of my back that woke me up several times a night. On getting up didn't seem to bother me. constantly tired when getting home from work . Just put it down to getting older.

Around November last year noticed that my bottom was disappearing. Wasn't very big before. I am 5 foot seven and weighed around 9 stone 10 pounds, never really changing weight. When I mentioned this to doctor she told me it happened after the menopause. During January this year I started having diarrhea 5 - 10 minutes after getting up in the morning. My muscles in my thighs, groin and buttocks were slowly disappearing and I started to weigh myself, something I have never really bothered with. I had lost about 6 pounds. Also having aches in the pelvis region but not horrendous pains.

I went to see my doctor and said I was concerned about my weight and muscle loss and the low backache and pelvic niggles . He sent a faeces sample off for analysis and did blood tests. Everything was ok but 1 of the blood tests showed something to do with fat sticking to my blood. I asked if it could be my ovaries. He thought not but booked a scan for me. Said it was more to be a gastric problem.

I have private health so he told me to see a gastroenterologist. My weight is now 9st 2 pounds and I am lethargic and though it may not seem a huge weight loss it is noticeable by all friends and colleagues as I am already a slim person. I had a scan at the hospital on the 16th March and my ovaries are fine. I have just had a colonoscopy on the 18th March. The doctor has taken biopsies but said that he was sure that my colon showed no signs of problems and that I was to go back in 2 weeks. I mentioned that I was thinking it could be the Statins as I had seen on the contra indications that muscle loss was a rare side effect.

His response was to stop taking them! I have not taken them for 3 days now and after getting the laxative out of my system, this morning, 20th March, was the first time in the last 10 - 12 weeks that my bowels have not been loose in the morning. I am now going to make an appointment to see the GP to tell him that I will no longer be taking statins. I just hope that my muscle wastage and weight will return to normal and that I will regain some shape to my 'bottom'.

I'm a neurologist who has seen countless cases of mild muscle weakness and several cases of profound weakness, all occurring without any muscle pain or enzyme elevation, "cured" by stopping statins of all types. Meanwhile lowering LDL and raising HDL is serious business. There are a host of other statin side effects including cognitive compromise and neuropathy that go unaddressed. The question is, "For what time increment must one wait after stopping a statin to establish if a symptom was statin related or not?"

EDK,

I appreciate your post. Your question at the end of your post, about the "time increment" needed to establish possible statin cause of symptoms, is an excellent point. It gets to the heart of the tradgedy of the situation as I see it.

It appears that despite an amazingly widespread reporting of strong anecdotal evidence of statin side effects, the establishment has little interest in researching these issues. In my experience, the evidence is overwhelming for very frequent statin caused health issues, which are largely ignored by the medical industry, and government regulators. I know of MANY friends and relatives who came off statins because of intolerable statin caused symptoms, and experienced rapid relief. But many effects are slower to cease, and sometimes permanent. (as in nerve damage) I don't know that ANY of these cases where my acquaintance's statin symptoms were reported by their doctors, or that the FDA was informed of any of them. The doctors simply took them off the statim, when symptoms reached the point when they could no longer be ignored.

My mother in-law, now elderly, has total cholesterol BELOW 200, but since her LDL was SLIGHTLY above the latest recommended level, her doctor has put her on a statin. (She has neuropathy.) So, how much sense does this make?! (Neuropathy being an established side-effect of stains.) How might this affect her quality of life. What if nerve damage gets worse, or ALS symptoms begin? Who can say if the statin had a trigger effect? Who will study these things?

Now they are trying to widen the statin market to include youths. How will this effect their muscles, nerves, cognitive ability, likelihood of ALS in later years? Does anyone care? Is the medical community and Big Pharma interested in studying statin effects in the depth needed to truly ensure more safety for patients? Will statin-damaged youths be misdiagnosed, and given even MORE drugs to counter their symptoms that are in reality statin caused?

To me, this is one of the great health tragedies of our time. Elderly people, and soon more youths, will experience statin damage. It will often be missed and misdiagnosed, and people will suffer greatly, and needlessly.
Statin effects deserve deep study, but there is no money in it.

JM

Here's the latest on myopathy from the FDA:

The FDA is conducting a safety review of simvastatin by reviewing data from clinical trials, observational studies, adverse event reports, and prescription use data.

According to a 3/19/10 FDA statement, the risk of myopathy is increased when the highest dose of simvastatin is used. The statement advises health care providers to be aware of the potential increased risk of muscle injury associated with the 80 mg dose of simvastatin (the highest dose available) compared with lower doses of simvastatin and possibly other statins. Although myopathy is a known side effect of all statins, the FDA statement said “today’s warning highlights the greater risk of developing muscle injury, including rhabdomyolysis, for patients when they are prescribed and use higher doses of this drug."

Specifically, preliminary data from SEARCH (Study of the Effectiveness of Additional Reductions in Cholesterol and Homocysteine) trial, which compared major cardiovascular events in over 6,000 patients on 80 mg or 20 mg of simvastatin for almost 7 years, found that 52 (0.9% which is a rate of 9 per 1000) patients on the 80 mg dose developed myopathy, compared with 1 patient (0.02% wich is a rate of 2 per 10,000) on the 20 mg dose. There were 11 patients (0.02% which is a rate of 2 per 10,000) taking the 80 mg dose who developed rhabdomyolysis, but none in the low-dose group.

The FDA also approved a labeling change for simvastatin earlier this month, based on interim results of another ongoing clinical trial, the Heart Protection Study 2. The revised label states that 80 mg of simvastatin should not be combined with niacin (at 1 gram or more per day) in people of Chinese descent. The revised label also recommends caution when 40 mg or less of simvastatin is used in combination with niacin (at 1 gram or more per day) in people of Chinese descent. The study found that myopathy was more common among patients of Chinese descent (0.43% which is a rate of 43 per 1000) who were taking simvastatin 40 mg plus at least 1 gram of niacin daily, compared with patients who were not of Chinese descent (0.03% which is a rate of 3 per 10,000).

The FDA has also requested that the simvastatin label be changed to include the recommendation that doses of simvastatin above 40 mg per day should not be prescribed for patients who are also taking diltiazem, because this combination has been associated with an increased risk of myopathy. Other potential drug-drug interactions with simvastatin are listed in the label.

PEOPLE'S PHARMACY RESPONSE: THANK YOU, DR. A, FOR THIS EXCELLENT SUMMARY.