Statins and ALS-Like Syndrome

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.

Although I have had no heart problems, I have bad heart genes - family history. My doctor put me on Zocor to reduce my cholesterol which wasn't that high but this was considered a preventative for heart related problems. When my legs had cramps at night, yellowing of the whites in my eyes and lots of muscle aches in my legs, I took myself off of it for several months. The symptoms went away.

I went back on Zocor and after several months, my cholesterol went up again. My doctor wanted to double the Zocor but I refused. My pain all over was so intense that I was close to tears and could hardly climb stairs. Once again I noticed yellowing in my eyes. That was several weeks ago. I still have leg cramps and bad muscle pains in my thighs. I realize that I need to lower my cholesterol bud don't want the statins again.

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