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Statins & Irreversible Muscle Damage, ALS-Like Syndrome and Myositis

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For decades we have been receiving messages from people who have experienced devastating and debilitating muscle damage from their use of drugs like atorvastatin (Lipitor), rosuvastatin (Crestor) and simvastatin (Zocor). By 2007 we had names for these reactions: ALS-like syndrome, necrotizing myopathy and myositis. Here are just a few stories that barely scratch the surface of the pain and suffering people have described:

"After 4 years on Lipitor, my husband can no longer walk on his own. Two weeks ago I mentioned the possibility of Lou Gehrig's disease (ALS) to his M.D. She said it was Parkinson's disease.  After reading your article, I am confused." C.D., Aug., 2007


"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 was being diagnosed with osteoporosis.

"I mentioned my leg problems to the rheumatologist. 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 disease, 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 disease since it is so rare. However, I did find an abstract in the Science Direct 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 diseases. I personally think the statins, especially Crestor, initiated this disease. I will live with this the rest of my life and unfortunately the prognosis is that in 10-15 years I will be unable to walk without support." B.A.H., Oct. 30, 2007


"My sister, after taking Lipitor for about a year or so, was diagnosed with ALS.  She lost her speech, ability to swallow, her balance, became totally degenerated and she died 18 months ago.  She was in perfect health and very strong for her age (76) until this dreaded disease struck her.

"It is imperative that people are made aware of this.  Too many of them are taking this medication and the pharmaceutical companies are making a fortune." A. Nov. 4, 2007


"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."  J.M., Nov 5, 2007


"Starting about two years ago, I took simvastatin daily for about three months in an effort to reverse known, but early-stage, coronary-artery disease. I discontinued it because of worsening weakness in my hands.

"Three months later, I agreed to try pravastatin which I took for about 7 months before the symptoms once again worsened. I once again stopped the medication and have not taken any statin drugs since. Nonetheless, my ALS-like symptoms are progressing and spreading.

"I am currently undergoing thorough neurological evaluations. Did the statins serve as a catalyst for a pre-existing condition? Were they simply unfortunate coincidences? Were they responsible for my other symptoms? So far, nobody seems to know." M.R., Feb. 23, 2009


"I developed muscle weakness soon after starting Lipitor. When I complained to my doctor, he switched me to Vytorin. The muscle weakness continued even after being off the statins for 6 month. I was diagnosed with biopsy proven inclusion body myositis. My muscle strength continues to decline and my neurologist says that there is no effective treatment at this time." M.K., March 26, 2013


"After taking statin drugs for approximately a year, I developed muscle cramps. I discontinued the drugs, but the muscle cramps and then muscle weakening continued. I was diagnosed with ALS in June of 2013. 
Until the muscle problems started, I had always been very healthy and active." Dona, Feb. 2, 2014


According to the FDA, such reports are mere coincidence. The agency analyzed data from clinical trials and concluded that:

"FDA Analysis Shows Cholesterol Lowering Medications Do Not Increase the Risk of 'Lou Gehrig's Disease' Agency recommends no change in prescribing and use of statins"

The trouble with the FDA's assessment is that it relies on industry-sponsored studies. When patients develop complications during such a clinical trial they may be dropped from the study and their data may disappear without a trace. In addition, there may be a genetic susceptibility that makes some people more vulnerable to this reaction than others. Clinical trials may not detect a signal that affects a relatively small number of people. But given that tens of millions are taking statins, even a relatively low risk can quickly turn into a large number of people.

A New Understanding of the Mechanism Underlying Severe Statin Myopathy

Doctors like mechanisms. In other words, they often don't believe something unless there is a scientific rationale to explain it. That is why the ALS-like symptoms and myopathy issues have been so controversial. Many doctors have just refused to believe there was a reason for this complication other than simple aging.

Now, an article titled "The Spectrum of Statin Myopathy" published in Current Opinion in Rheumatology (Nov. 2013) reveals a potential cause for irreversible muscle damage triggered by statins.

The authors point out that 5-20 percent of patients "do not tolerate the side effects of statins, resulting in discontinuation of therapy." Most of the muscle problems disappear after discontinuation of statins. The authors go on to say:

"In these patients, statins are thought to cause a direct toxicity to muscle fibres that is self-limited, here referred to as toxic statin myopathy. In contrast, a small number of patients with concurrent statin use develop a progressive, autoimmune necrotizing myopathy. This disorder is characterized by progressive muscle weakness, elevated muscle enzymes, specific autoantibodies against the target of statins, HMGCR and progression of symptoms and signs despite discontinuation of statins."

The word "necrotizing" should raise red flags for any physician. It is derived from the Greek word nekros or death. It literally means "causing the death of tissue." In the case of statins, the death of muscle tissue.

The article goes on to say that statin-induced muscle damage can occur within a week of starting treatment or after four years. In our experience with visitors to this website, it can even occur after more than a decade of use. The higher the dose of statin, the greater the risk, though some people seem to be so vulnerable that even a small dose can trigger severe muscle reactions.

The Bottom Line

Although most people are able to recover muscle function after discontinuing statin therapy, a minority develop an "autoimmune necrotizing myopathy" that continues despite stopping the medication. The authors of the report state that "Anti-HMGCR antibody testing may provide a useful noninvasive test to help diagnose these patients and direct their treatment." Employing powerful immune-suppressing drugs may help control the progression of this disease, at least temporarily.

Ultimately, the FDA needs to come to terms with the large number of people who are suffering statin side effects. A re-analysis of the many ALS-like and myopathy case reports may lead the agency to reconsider its exoneration of statins. In the meantime, we hope that patients and their families will become more aware of this potential complication and take heed.

Share your own experience with statins below in the comment section. You may also find our book, Top Screwups Doctors Make and How to Avoid Them of interest. We discuss the tunnel vision that has made it hard for so many prescribers to come to terms with a variety of devastating drug side effects.

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57 Comments

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I have been on Provahon 40 mg, for a long time, I now have a problem with the Piraformis muscle in my left leg, that travels down my leg, and front thigh,and some times down my leg like tingling or electric, which I think is nerves. Could the Provahol be the cause, after all these years? And sometimes I get leg pain at night hen sleeping, that wake me up, thank you...

I have been taking lipitor for about 10 years, 10 mg. then 20mg for about 4 years. During that time I was diagnosed with restless leg syndrome for which I take 1 mg of requip 4 times a day. I started out with only 1 mg a day and had to steadily increase because symptoms became worse. Now I have leg cramps at night occasionally with cramps in my toes during the day. In addition, I have begun to have problems with sciatica ( pain goes from my right buttock down my right leg).

Could statins have caused all these problems? I also have elevated liver enzymes, specifically alkaline phosphatase, for which I have had numerous tests to determine the cause. There have been no causes found. This has been a problem since I began statins. No one mentions that statins could be the cause. I am contemplating stopping lipitor to see if any symptoms subside. Does anyone have any suggestions?

I felt increasingly dizzy and forgetful several years back when I was taking a statin so I stopped. My cholesterol level increased badly. High cholesterol is a genetic problem in our family. My diet is careful... Doctor put me back on Crestor. I have taken for three days now and am not willing to continue. Any suggestions?

I have been taking all kinds of statin since 7 years ago when I had to insert a stent after a heart attack.
After a while I started getting bad cramp in my legs early mornings when I tried to stretch myself. I also started getting pains in my arm (point pains on my shoulder).

Now , since last week, I am getting excruciating pains in my left arm and shoulder which wakes me up at nights.
My cardiologist had me to x Ray my neck and tells me the pain is because of a minor arthritis in my lower neck, and I should continue taking the statins.

Does any one have a similar problem??

Are there any connections to Parkinson"s Disease from Lipitor? My husband has been taking Lipitor for 20 years or more. He is now at 40 mg a day. He has recently been diagnosed with Parkinson"s Disease. His close friend also is on stains for over 20 years and has developed Parkinson's Disease. Have you heard of this connection?

People's Pharmacy response: The connection isn't clear. In the summer of 2013, an epidemiological study showed fewer cases of Parkinson's among those taking statins:
http://www.ajmc.com/publications/issue/2013/2013-1-vol19-n8/Long-Term-Statin-Use-and-the-Risk-of-Parkinsons-Disease

Your war on statins is very disturbing to me. I have been on 10mg Lipitor for about fifteen years with no negative side effects. I tried to go off them after reading the horror stories you post continuously and my cholesterol soared. My doctor has pointed to studies that indicate there may be other benefits from statins as well. Granted the lowering of cholesterol itself is controversial, but you need to point out that first of all, it is a very small percentage of people who cannot tolerate them, and of that small group a tiny percentage whose negative symptoms do not disappear within a week or two after stopping the drug.

I have been hearing about negative reactions since I started the statin and have only encountered two people who had them and both were fine after stopping using it.
What bothers me about your crusade is that you might be harming the majority of folks by scaring them off a drug that can be helpful.

How about a truce? You try to be more balanced and clearer that statins may in fact be helpful and those of us who use them, and doctors who prescribe them, can be more willing to admit possible harmful side effects and doubts about the efficacy in terms of life extension (there is no doubt about efficacy in lowering cholesterol).

PEOPLE'S PHARMACY RESPONSE:

Thank you for your perspective. Your point is well taken that many people do not experience any symptoms or side effects from statins. If they have heart disease or have experienced a heart attack or stent there is a very good reason to take a statin. It will reduce the likelihood of another event and prolong life.

The issue is much more confusing when it comes to what is referred to as primary prevention. A thoughtful analysis in BMJ (Oct. 22, 2013) points out that "140 low risk patients must be treated with statins for five years to prevent one major coronary event or stroke, without any reduction in all-cause mortality."

There is much we do not know about the long-lasting side effects of drugs. This is not an area that has been well studied. Randomized controlled trials (RCTs) rarely investigate adverse drug events that persist longer than a few days or weeks. We only wish there were more attention directed to this issue.

Bottom line: Statins have a very important role to play for those who truly benefit, especially if there are no complications. Side effects may not be as rare as previously thought and for those who cannot tolerate such symptoms, there needs to be honest discussion between the prescriber and the patient. Other potential benefits of statins need to be studied in well controlled trials. We have learned from the famous Women's Health Initiative (WHI) that hormone replacement therapy was not as beneficial as hoped and there were unexpected risks.

My cholesterol has hovered around 220 - 230 for the last 8 years. I have tried every different statin on and off for years. I develop muscle weakness after taking a statin usually within a month. I have also tried taking low dose - one every other day, but, eventually, I start to feel weak. It usually takes a week or two to recover when I stop taking them.

I find I can't enjoy the things I like to do, walk, play golf while I am on a statin so my decision is to not take them and enjoy what life I may have left (I am 67). We do not have heart disease in my family and I feel exercise and diet will benefit me more.

What can we do for an alternative to statins? They caused me back problems. I appear to be one who makes my own cholesterol, as I have a very low fat diet, and avoid transfats like poison.

I take Flaxseed oil and 1 gram of Niacin daily, but it shows no difference.
I have deposits in the carotid arteries.

Somewhen about '97, my cholesterol level measured about 240 and I started taking Lipitor. Somewhen about '06 or '07 (I think) my Medicare corporation insisted I take Lovastatin. A month later my doctor yanked me off Lovastatin because a blood test said I was starting to get liver damage. I sent my information, even screamed and yelled at my Medicare provider and they said "NO". So I quit taking statins till I could change providers. And then back on Lipitor till a few months ago.

I suddenly had achy muscles all over my body-- mostly the large muscles I use most -- legs, arms, back, and neck. Hands, face and tummy didn't bother me. I had just reread your "Cholesterol and Heart Health pdf and so I quit taking my (now it's called) atorvastatin.

Achy muscles is a euphemism ---I HURT! As I've said here before, I do trigger point massage. It still took 3 days of almost constantly massaging the trigger points in my muscles to diminish the pain enough that I could function and another few days of less-than-constant massage to have them disappear. One of the biggest helps was to run a hot-as-I-could-stand-it bath, with a handful of table salt in it -- salt keeps the oils in my skin better than bath oils and drinking a half gallon of cold water keeps me hydrated. And I massaged my muscles while in the hot water. The heat expands my veins allowing them to carry off more toxins, and relaxes my muscles more so my massage is more effective.

My wife and I have Masters level science backgrounds, which is why we say: my achy muscles are only anecdotally related to my statin use. I have no definitive proof. Still, there are enough people telling similar stories that I consider it to be almost proof positive. And yeah, yeah, I know that roosters all over the world crow in the wee hours before the dawn (ours does too) and when the sun comes up, they quit -- so the crowing is not proof positive of causing the sun to rise. Still, I think this is in a different category, and I would like to see medical studies of statins and trigger point formation. I'm confident they would find proof positive.

I have post-polio syndrome and scoliosis which cause nerve and muscle pain, and I have only slightly high cholesterol. I take aspirin for pain, and I go walking with my dog, for exercise. I refuse to take statins, because of side-effects and adverse reactions they can cause. I know several people who also have PPS and they are taking statins. Most ended up in wheelchairs with very severe pains, more weakness and are on strong pain medication. Their doctors refuse to let them stop the statins, despite what the drugs are doing to them. Of course, healthy patients means less profits for doctors, hospitals and drug companies.

I have been on Zocor for a number of years. In January I was admitted to physical therapy for back pain. During my assessment I was found to have profound weakness in my legs (on a 1-5 scale my strength was a 1). I also had some balance issues that necessitated a cane to prevent falls. After much physical therapy I graduated to a 2 on the strength scale. I do have balance issues still and am working on regaining leg strength with the treadmill and stationary bike. Am working my way off Zocor.

I started taking 40mg of Lescol in 2000 because of slightly elevated Cholesterol readings. In 2007 I developed a weakness in my right leg and a occasional numbness which continues to today. Lescol has kept my Cholesterol under control, but because of the issues with my leg I stopped taking the statin 2 months ago. Since stopping the statins I have not noticed any increase in strength in my leg or change relative to the numbness.

From reading the reports it sounds like it may take 6 months or longer to see any reversal from taking the statins if there will be any. I have a family history of heart disease so I am struggling with taking the statins or not. I am 68 years old.

also check out dr.graveline - lots of great info on his site spacedoc.com

I have had restless legs for years and finally solved the problem with magnesium supplements. I hope this might help you.

Most of this is related to Lipitor which caused me problems too. I am now taking 10mgs of Crestor - Are there similar problems with Crestor? Is it a problem with all statins?

I was on Zocor/Simvastatin for several years. The most recent: 30 mg./day. I now am afflicted by vascular Parkinsonism, type 2 diabetes and peripheral neuropathy. Statins are harmful to many of us. They are NOT the saviors our brain-washed doctors make them out to be.

I have read that using apple cider vinegar could reduce your cholesterol. So I have stopped taking my Lipitor for a few months to see how this works until I get my next blood tests. You might want to mix it with some juice because its pretty strong--James

Have been on Atorvastatin since getting a stent about 6 months ago. Definitely have noticed a weakening and soreness in leg muscles especially thigh muscles. Previously active and in great health.

Several years ago my doctor prescribed Crestor as my numbers were 'of concern.' I had other moments with him that to handle any matter he did not like, I received a prescription. Not a discussion of alternatives, changes in lifestyle, etc., just pills. On this day he gave me a starter packet of Crestor with a prescription. Told me to start immediately and take them the rest of my life. All of this pitch made me nervous as I had no previous experience with 'life-long' drug taking. As I walked out of his clinic, there was a young woman (sales rep) pitching Crestor to several others who were going into the clinic.

Once @ home, I found a blog for folks using Crestor and was shocked! Just as described in your article, people were reporting horrific problems, when days/weeks before they were fine. Clearly the 'cure' was worse than the problem. I immediately wrote a note to my now ex-doctor, put it with the sample packet and returned it to him. Simply said that he was more a danger to me than a few points of cholesterol that I could control. A diet change did make the difference. I encourage folks that if they're concerned about Crestor (as they should be) find another doc with other solutions.

STOP WORRYING ABOUT CHOLESTEROL! Cholesterol is a God given substance, in our bodies which is present in virtually EVERY CELL in our body. Most abundantly in our brains. Who do we think we are to simply remove it without risk of complications. Cholesterol is ESSENTIAL to making Vitamin D, Steroid Hormones and many other substances. The best any statin study has ever shown, was a less than 1/2 of 1 percent absolute risk reduction in coronary events (Heart Attack)
Dr Beatrice Golomb of the UCSD Statin Effects Study has done a rather extensive study of ALS as it may relate to Statins. Keep in mind, ALL STATINS work the exact same way, by blocking an enzyme (Acetyl CoA Reductase) in the beginning of the Mevalonate pathway, and by blocking this enzyme, EVERY other element in this pathway, is also blocked. CoQ10, Dolichols, Testosterone, Steroid hormones, etc..etc and so on. You can see a brief article on Dr Golombs work "Amyotrophic Lateral Sclerosis-Like Conditions in Possible Association with Cholesterol-Lowering Drugs" here: http://link.springer.com/article/10.2165%2F00002018-200932080-00004

No matter what the risk, we as patients ARE NEVER made aware of the Actual Risks versus the menial benefits..Its Called INFORMED CONSENT, and we are not getting it.

In 2007 at age 57 my husband (a smoker) – had to have a stint. He had never had high cholesterol or high BP. He stopped smoking – got the stint and they put him on Lipitor and Toporal.

He started complaining to me a couple years ago about his arms were getting so weak, he couldn't hold the milk carton when he got it out of the refrigerator. He complained of Restless legs, but I put him on Vit D and that seemed to help that problem. But his constant complaining of not being able to hold hammers, get things out of the refridge, bothered me.

Then I read about all the issues with Statins. My father age 93 has been on Zocor for 28 yrs. I noticed years ago he couldn't open soda bottles - weak in the hands... but never thought it could be statins, thought it was old age. A friend almost died from taking statins. So about a month ago I couldn't take anymore, so I asked his doctor put him on something else, she is trying “Lopid.”

It is a pain, cause they are big pills taken twice a day and 30 mins before eating and he never knows when he will eat exactly. But we are trying Lopid and I fear what side effects that could cause!

I’m just upset because even with low Cholesterol and low BP all his life (125 Cholesterol) he has to take these dangerous drugs because of blockages. These medications scare me. I don’t have much data on this Lopid yet – still early. He does say he THINKS the weakness is not as bad. But hard to know if it is your mind playing tricks or what. So the jury is still out. I guess if Lopid doesn't work – Niacin will be next? I don’t know! But it is very frightening because this is my husband of 37 yrs!

Hi Pat,
I was on 20mg. Crestor for almost a year. Had muscle cramps most of that time. finally my dr. took me off it. What amazed me was that AFTER I stopped the Crestor (within a week), several other things that I had not associated with the Crestor disappeared along with the muscle cramps: my balance went back to normal, I stopped having vertigo, my memory improved tremendously, and I was no longer depressed.

That was three months ago and none of those side effects have returned. The question of my cholesterol concerned me, and so I totally changed my diet. within 6 weeks my cholesterol numbers were all better than they had been on the Crestor.

I cut out all sweets, all sugar. I stopped eating all white rice, most bread, crackers, and potatoes. I only eat whole grain bread and limit that to about 2 times a week. I actually eat MORE fat than I did before, but it is healthy fat. The only meat that is safe is organic, grass-fed.

I am trying to replace milk with almond milk (soy milk is bad because some soy is a GMO). I haven't felt this good in 20 years. I am also exercising a lot more, and take a number of supplements that help keep my cholesterol numbers where they should be. I don't enjoy my current diet at all, but it has done wonders for my health. I would suggest to anyone that they do whatever they can to adjust their diet and exercise instead of going on any statin.

In a nutshell: STOP EATING ALL SUGAR and most bread products----that alone will make a difference.

@ Kim and everyone else: I found an interesting and a very enlightening article on statins, Cholesterol etc It was an ABC video in Australia, which has several cholesterol/heart disease experts speaking on the OVER USE of these barely effective drugs...There are MANY Physcian Testimonials as to their very real patient accounts with Statins, and the actual research which was done..

http://www.abc.net.au/catalyst/stories/3881441.htm

My husband got off statins after suffering from very serious muscle weakness. Long story short, he went to life style changes. He watched his diet and lost over 15 lbs, no sugar, low fat diet and regular exercise. His cholesterol numbers have decreased dramatically without medicine. Why do Drs continue to push this stuff!

Lipitor, 20mg, was prescribed for me after it was found that I have 50% blockage in my artery. My legs became achy, especially at night. After having taken the medication for about two months, I contacted my doc. She took me off of Lipitor and replaced it with 2.5mg of Crestor. So far, no leg pain. But is it really necessary to take it at all?

There is a family history of heart disease and stroke. We rely on our docs to guide us. But then we read so much conflicting info. I like eggs, the whole egg. I may eat two at once, twice weekly. Has this caused my blockage? I've read that eggs are not a culprit. It is so confusing.

My husband experienced weird symptoms, it was like he aged 10 years in a few months, falling, shaking etc., So I asked his Dr. Could his medications be causing this? He said no way. Well, I looked up symptoms of Crestor and guess what? He had so many of the side effects, I told his Dr. to take him off and after about a few months, he got better. His friend, who kept taking Crestor, now has been diagnosed with ALS, or Parkinson's disease! People, be aware of your medications and side effects! The Dr. Said it only affected one in a few thousand. Well, what if you are that ONE?

Personally I believe Statins are dangerous meds. I don't care what Dr.s say----they don't have any long term information about people taking these medications---I was put on Simvastin and after about a week noticed extreme joint pain, which my Dr. said it doesn't cause---but in checking with my pharmacist found out differently---because after I checked the bottle it said right on the bottle--Causes joint and muscle pain and he had the nerve to say to me it doesn't cause joint pain. I beg to differ with him----my knee joints, ankle, hips and arm joints ached so bad I wanted to cry and I called him and told him you can put on my chart I REFUSE to take this pills that are causing me severe joint pain.

It was like a nightmare -never in my life did I had joint pain, sure you get arthritis pain but this pain came on so sudden after the medication and it was so different than arthritis -arthritis doesn't just pop up after you take pills. I personally feel people are over medicated with these drugs and you are going to see a lot more health issues arising from taking these statin drugs -they need more studies done before dosing people with this stuff---again it makes some people rich and we know who they are.

I saw my brother-in-law deteriorate so badly while on Lipitor it was truly sad and awful----he could hardly walk because his muscles were painful and they were deteriorating so fast it was sickening to watch. I can only say be careful what you put in your body. Dr.s are not always right about everything.

You can make good judgments if you know your body and it is important to know your body. Its a must to make sure you make the right choices for yourself. I am not sorry I quit that stuff because I do not have those awful joint pains and I can tell you this I don't miss that awful pain.

Be your own Dr. to a degree- you can tell how you feel when you take medications---I know that some people have to take them and I understand that but the whole world doesn't have to be on these drugs.

to: AMS
I have heard if you have a stint - you MUST take Cholesterol lowering drugs for life. I can understand taking statins if you have high cholesterol that diet and exercise does not help. Then it makes sense you need drug help. But if possibly, which I assume, it was my husbands smoking that caused his blockages and he hasn't smoked since 2006, wouldn't that cut his chances of more blockages more than in half by itself and he wouldn't need drugs?

I guess its a good question for the doctors. Why just because of having one stint do you need a life of Cholesterol lowering drugs?

Carole:
You said you had high alkaline phosphatase levels. That should have raised a red flag. That is a forerunner for muscle problems. What I would suggest is talk to your doctor about reducing the dosage of your statin and/or take it every other day. As some newer studies indicate you don't have to go to rock bottom levels in cholesterol.

Most doctors are under the mistaken notion that if cholesterol level is 150 dropping it to 100 is better. Not really. That is an overkill. The American philosophy with respect to food is "more is better." That has landed many in big trouble.

Likewise when it comes to blood pressure "less is better"--that is also to be reconsidered. There is no need to go to one extreme or the other. The best thing to do is to eat less food in general and reduce fatty/sugary foods in particular. Drink lot of water everyday and walk couple of miles a day everyday. You will feel and live better.

I am on Zetia because of high cholesterol. I tried statins (simvastatin and prevastatin) but stopped because of muscle weakness and pain. I wonder if Zetia can have the same negative side effects as statins? I think my thigh muscles are beginning to ache and feel weak.

People's Pharmacy response: Zetia causes muscle pain in some people.

In the mid 80s, after two heart attacks in his early 40s, my husband was put on Mevacor, one of the first statins. This despite an angiogram showing mostly clear arteries. After the first heart attack I began making oat bran muffins, the recipe found in 7 weeks to a cholesterol cure, which I believe lead to the good report from the angiogram he had after the second heart attack.

No male in his family made it to the age of 55, they all died with heart disease, which is why he went on the mevacor. He was also taking bp meds, something else he inherited. In 1989 he was diagnosed with ALS, in 1990 he died. We first saw signs less than a year before diagnosis. It was all very fast. Never did I connect his ALS to the statin.

In 1997 I had an angiogram, they found a blocked artery, although all others were clear, and inserted a stent. My doctor insisted I begin a statin; I did have total cholesterol in the high 300s, so I accepted. In 2010 I decided enough was enough and discontinued the lipitor on my own. Suddenly I began having blood sugar lows; I am a diabetic. My insulin usage dropped by about a third. Today I have spinal stenosis, related?

My total cholesterol is now in the low 300s, my hdl 99, and my doctor is making noises about a statin. A recent angiogram showed one very small blockage in one very small artery; all others are clear. I made negative noises back and he retreated; but made it clear that was "for now". I am 76, a product of so much disinformation and doctor error, in constant pain, have been warned that I must do specific stretches several times a day, or a wheelchair will be in my near future. Who needs lipitor?

Thank you once again Terry and Joe for giving us information to HELP US MAKE INFORMED CHOICES ABOUT OUR PERSONAL HEALTH! Just as we all have different opinions about various aspects of life so do doctors.

Some life choice options that I may decide to make may be different from my doctor's opinion. That is MY choice and RESPONSIBILITY. I have a vested interest more than anybody else on the planet (except maybe my husband) about my health.

Thank you again for helping to disseminate information, connecting folks and helping me to feel empowered to make my own (intelligent) choices!

Several years ago, I was put on 20 mg of lipitor because of high cholesterol. after a few years my arm muscles were too weak and painful to lift a gallon of milk from the fridge. When I learned about similar problems with statins, I stopped taking the lipitor and the weakness and pain stopped.

My doc insisted that I try a smaller dosage and put me on 10 mg. This time my leg muscles became so weak that I feared falling. So I stopped the Lipitor again.

About 2 years ago, I had a mini stroke. So my doc insisted I try 5 mg of crestor. now the muscles in my legs are bothering me again. When I'm out shopping, my left leg feels very weak under my body weight. I have a dr. apt. scheduled for Tuesday. I am anxious to hear his recommendations to address this problem.

I'm convinced that years on Lipitor hastened my husbands slide into Alzheimer's. After being on it for 3 months myself I quit taking it and told the doctor I refused to take any type of statin. She reluctantly agreed and put me on prescription Niacin, it seems to be working. I've also lost weight and upped my exercise routines to 4 days a week.
Reading The Great Cholesterol Myth gave me wonderful new insight into the fraud big pharma uses to get us to take these dangerous drugs.

I tried Zetia after having problems with both Lipitor and Crestor - same problems after about 2 weeks. I took myself off and said no more! I'll accept the consequences. So far I'm still alive...

I have been taking Simvastatin for several years without any serious side effects. I do have occasional leg cramps at night but don't know if the statins are to blame. They do help my cholesterol levels. You make a good point about long term studies needed. I was a volunteer @ NWMH for the estrogen study.

I am diagnosed with muscular dystrophy long before I went on a statin. First was on Lipitor developed muscle pain.
Switched to pravastatin have been able to pravastatin. The muscular dystrophy is getting worse. In between a rock and hard place with strong family history of heart disease and an inherited muscle disease. Tried fish oil it was a big failure. So still on pravastatin.

@Jn I understand why/how you were persuaded to take a statin, because SO MANY DOCTORS AND PRESCRIBERS as well as patients are given this ABSOLUTELY FALSE sense of security that by taking a statin, you will reduce your risk of a heart attack up to 50%...that is a LIE! That is manipulating the data, to get it to look much better than the Absolute Risk Reduction of 0.34%....That is less than 1/2 of 1 percent chance that you will see any benefit from taking a statin...Not worth it in my eyes...watch this video from Australia ABC, http://www.abc.net.au/catalyst/stories/3881441.htm and decide whether or not you want to take these drugs.

took SIMCOR for over a year. Played Hockey and ran 5k's. Muscles cramped 20-30 times a day. Diagnosed with A.L.S. a year later.

Ask your doctor if Fenofibrate would be helpful. It helped my husband, but they tell us even though his numbers are now good, there is no research the med works. Go figure.

I feel so bad for all the people that are and were on those dreadful Statin Medications ---I was lucky because after four weeks on Crestor ---I started having severe joint pain in my legs arms etc. I didn't have this problem until that Drug-----I told my Dr, and he said, "Statins do not cause joint pain but they do cause muscle pain", and I told him that is not what it said on my medication bottle, that the Crestor came in!!!!!

It said, can cause JOINT and Muscle pain!!!! So I told him, I got to the point where I couldn't walk up my stairs to the second floor. I told him I am off this drug -he said you refuse to take it---and I said you got it --no more for me.

I feel so bad for all that have suffered with other issues because of any medication--not fun ---and when a Dr. tries to belittle me like I am some kind of idiot--that is when I say Adios to him. Which I did and I am so grateful I did. These Statin drugs do cause issues and mine was joint pain and I mean it was not a pleasant experience and do not want to experience it ever again.

My heart goes out to all of you----may you find something to help you with your health problems.

God Bless

My husband has been suffering the same muscle weakness and pain as described by all of the others who have contributed their comments. Today we saw a new neurologist who was quite willing to listen and she agreed to run more tests, including the Anti-HMGCR antibody testing mentioned above. However, it couldn't be scheduled because none of the labs had ever heard of it before. She was assuming that it was a blood test. Could you please give more information on what this test is, how it is administered, and where it can be done? The doctor is quite interested in the test and eager to learn more about it. Thank you for any information or assistance anyone can provide.

People's Pharmacy response: The antibodies are available for laboratory use, but it is likely that most labs aren't doing this test. Here's an abstract about it: http://onlinelibrary.wiley.com/doi/10.1002/mus.23854/abstract

I had written awhile back about my husband and his problems with Lipitor. He is 64 and was a heavy smoker, till 2006 and he quit smoking because of a blockage and needed a stent in 2007. His cholesterol was never high. He always had excellent HDL, LDL, Trig numbers.

The doctors put him on BP med and Lipitor after the stent in 2007. Then the problems started. First “Restless Legs.” Then Pre-diabetic, then starting in 2011, Memory problems, complaints of severe weakness in his arms and hands. Bad cramping and he was unable to pick up a hammer, get milk out of the refrigerator.

Thanks to this forum and the peoples pharmacy I started getting educated. Someone recommended the book “The Great Cholesterol Myth” which I read. In January I went to his doctor and demanded help. So she put him on “Lopid” it is not a statin. But I didn't like it cause it still could have the same side effects. But I’m scared, I don’t know whether to just take him off the cholesterol drug or not. But he started on the Lopid Jan. 27th, 2014. Then I added 100 mg Ubiquinol CoQ10 to his daily pill taking. (1 x day) book says 2 a day, but I start out with the lesser.

He announced to me yesterday March 10, that he no longer had any hand pain or cramping, he was able to use tools again and hold on tight. He was bending his hands and fingers showing me how they were getting back to normal. He was thrilled and I was thrilled. Memory still is terrible. He goes the end of this month to have his blood panels done, to see how his “Glucose” and A1C is doing.

And as I said – his Cholesterol numbers have always been great. And why I loved the book because I always said the same thing. If your cholesterol is good, why, even with a stent does he need to be on the drug? I fear early Alzheimer's from these cholesterol drugs! I say his blockage came from smoking and since we stopped that I feel that would have solved the blockage problems.

I will question his heart doctor next appt. But around here, our doctors are from the old school and taught the old old ways and never up on the current findings. So I’m sure he will look at me with those glassed over eyes and laugh at me.

I stopped the lipitor on my own; just stopped and my blood sugars went into the basement. It took me several days and I wound up lowering my insulin usage by about a third. However, if you want to, you can wean your husband off. If it is a pill, cut it. If a capsule, drop down one every four or so days. If he is taking any diabetes medication, keep close track of his numbers.

As to the comment above about a stent: I had one put in 1998, an angiogram last May showed it plain and clear; the doctor was amazed. My blockage was a blood clot, thus far, has not happened again. I also use Q10, 100mg a day. And, as far as I am concerned the most important: I take a gram of arginine three times a day. Keeps the arteries flexible, blockages do not happen. As I take a slew of supplements, I cannot reason it out; however my HDL is 99, virtually no exercise.

People are waking up faster than doctors as to the dangers of statins and the sales are heading downward. Another pharmaceutical cash cow heading for the dust! If your doctor won't continue treating you in spite of your refusal to take statins, doctor shop until you find one who will accept your participation in your health care. They are there; I have one.

Insurance company switched me to a generic statin - since then I have experience chest pains off and on. Sever pounding in my chest - heart pumping very hard, wakes me up at night. It subsides after a few hours, however I end up sleeping on the couch so I can be semi-vertical. I never had this issue with Lipitor. Anyone else experiencing this?

Years ago, I started Lipitor (for slightly elevated cholesterol), and within less than 2 weeks began to experience weakness and pain in muscles and tendons, especially in the wrist. I was very healthy and strong, but found that I could not get up from a sitting position on the floor because my wrists would not support me. I dropped the Lipitor and the symptoms disappeared within a couple of weeks.

Now, 25 or so years later, my doctor insisted that I start crestor, though I explained my earlier problems with statins. I did "well" (no appreciable symptoms) on a half-dose, and I was told to increase by alternating full and half-doses until I was on a full dose. Less than a week later, still alternating, I began to feel tired, weak, and sick, with muscle and stomach cramps. My temp was 101.6 (very unusual for me; I almost never have a fever). I got a work-in apt with my doctor, who thought I had flu (I didn't, he determined) or possibly diverticulitis (again, he determined that I did not). By then, about an hour later than the first temp, my fever was over 103. When I went home without a diagnosis and only an offer of antibiotics which I refused, my temp was 106. I did not take the statin again. The symptoms all went away over the course of a few days. I will not take another statin.

Statins can be horrible. Check with your doc about niacin 500instant release. My wife's numbers all greatly improved and her total dropped 79 points in 8 months along with exercise and diet change. Her cholesterol is genetic

My cholesterol was very high and my doctor put me on Lipitor. My next visit did show a decent drop but was still over 200 and my triglycerides were through the roof. I told my doc I didn't want the Lipitor because of all the side effects I read about so he changed me to Zocor and told me to take 1200 mg of fish oil twice per day. My sister recommended the CVS brand which has absolutely no fishy taste at all! My cholesterol dropped to 170! all this without really changing my diet! So now, I am going to change my diet (I don't eat eggs or beef very much anyway). If my cholesterol goes even lower I will ask to stop the zocor/simvastatin!!

My mother in law has been having memory loss and all the signs of getting dementia but I don't feel she does have dementia. She was on Lipitor for some time but her doctor changed it to Crestor because he thought she was having muscle weakness. thinking back, this memory loss has increased since she's been taking it! My doctor told me for people over 80 there is no evidence that shows the statin she's taking actually lowers cholesterol so we are going to take her off the Crestor to see if the dementia symptoms will decrease.

Thank you for this link. My sister was a nurse for 33 yrs and died 9 months after being diagnosed with ALS. She was positive the statins caused it. We all have high cholesterol. in my family and NO ONE has died from heart disease, stroke, heart attack, etc. I refuse to take statins.

Hi James,

I have used apple cider vinegar - the brand with the mother. They are sold at health food stores or supermarkets. It does work wonders. This apple cider vinegar is mild. I add a tsp or more to a glass of water. A lot of celebrities use this including Jack LaLaine.

Hello,I too had a terrible time taking statins (Simvastatin). I thought the difference in me was too dramatic to be a coincidence and after 6 months I stopped taking them and hoorah I am back to my "normal" self again. For the 6 month period I had arthritis flare ups in my feet and pains in my leg muscles that were driving me nuts. My memory was shot to pieces and until I was able to think more clearly I really believed I was in the departure lounge of life. I would say DO ANYTHING to avoid this statin nonsense and if it is not a matter of immediate life or death then give yourself at least 7 days to consider with great care if you should start this treatment. Myself I will never take another statin medicine. I am reminded that medicine is a blind science but it is never blind to a money making scheme.

I too have had a similar experience with statins, but luckily my doctor ran a blood test for my creatine kinase (CK) which measures muscle enzymes, so I knew immediately that I could not take the statin.

I think all patients should demand a CK blood test while on any statin. Previous to taking the statin I had done things to reduce my cholesterol like, grapefruit juice with every meal, low meat and fat diet. Nothing made much of a dent in my elevated cholesterol. So I started the statin as a last resort, then was told within 30 days I had to stop, I did not have any muscle pain either.

So I started a regimen of Crystaline Niacin of 3,000 mgs a day to lower my readings, and it did drastically lower my triglycerides and raise my HDL, but again my CK levels were very high. So now I am not sure what to do, she wants me to take Zetia which works in the bowel, but I already have bowel issues. So I am reluctant to try that. I am overweight, so losing weight seems to be the only thing I have not committed to. Anyone have suggestions?

Thank you! We have been fed a lot of misinformation on fat and cholesterol for many decades. Cholesterol and fat are not our enemy. Sugar and foods that turn into sugar are the problem. I eliminated all sugar, grains and beans from my diet and added quality fats. It has changed my body composition, blood work and my life. People need to wake up and get educated.

After blood work in Feb. 2014 - and my Cholesterol was up to 204 - I decided then & I refused to go on medication. So I cut out 85% of my sugar intake! Of course I get some thru certain foods, and put a little in my coffee, but before I was a sugar-holic and feasted on candy, cakes and cookies.

I watched the talk Dr. Robert Lustig (fat chance) gave and that re-enforced my desire to cut out all sugar! I kept eating my fats! I love Blue Cheese dressing - I kept eating that I kept eating bacon, cheese burgers occasionally, I did not cut back on my fat intake. I love CHEESE! 6 months later my Cholesterol was 156. So this goes to prove - it is the SUGAR! I only drink water - never anything else. I never drink diet drinks - no fake sugars, no sugar of any kind - I read labels and if tomato sauce has more than 3 grms of sugar - I don't buy it! I just work hard at reading labels and not buying anything with over 3 grms of sugar in it! And I do feel by just doing that, made the difference.

The problem is I'm still , 6 months later, so addicted to sugar I can't stand it. I crave it daily. I walk thru the bakery and look at every cup cake, pie, and want it so bad. I want to drive by Krispy Kreme! Everyone promised that the cravings would go away, but for me it has not and I feel like I'm going to break any day! That is what scares me! What will happen (stressful) to make me sit and consume 6 cup cakes or a box of donuts! I'm really disgusted with myself and this horrible massive craving for sugar I have! I'm just scared it will never go away!

Good for you Kim!!!!! Now, go a step further and stop putting sugar in your coffee. Even that little will increase your cravings. Use cream or half and half instead. To eliminate cravings, you have to go low carb. And no artificial sweeteners. However, you can eat fruit, in moderation. Berries and cherries give the most bang for the buck and are incredibly sweet, once your taste buds have been re-educated. It can be done. Add fats like avocados and olive oil, coconut oil, which are all good for you. And are you eating your greens and colorful veggies?

Once again, good for you, I am sure it took a lot of willpower. Helen

My father was on crestor for awhile to lower his cholesterol. A short while after he started to experience weakness and pain in his shoulders, arms and hands. 2 years later he is home on a ventilation. They say it is ALS.

PS Don't walk thru the bakery; stay away from these areas of the stores where junk food lives. Do not set yourself up for failure; avoid this stuff as much as possible until the cravings are conquered. You have come so far already. I would also suggest looking up paleo dessert recipes, all gluten and sugar free. Look up Maria Emmerich, a friend of mine has had great success eating her way. Lost cravings and 70+ pounds. Good luck.

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