Statin pills and a warning sign

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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  1. Carol

    I was put on statins to reduce about 2000. I was also told to take COQ10 to prevent joint cramps. Shortly after taking the statin, Lipitor, I developed Diabetes, and severe weakness in my legs. I did not make the connection to the statin but gave up my exercise program and switch to aquacise. I gained weight. From time to time over the years I tried to stop taking the stains but my cholesterol would go up and the Doctor would put me back on it. We finally agreed on a lower dose. The leg weakness returned. I was told I needed spine surgery, which I had. :( . The leg weakness returned again. This time it occurred in both legs and arms. Exercise was painful but I pushed through it. One night I awoke in severe pain. I could not move my legs. I went to two orthopedics who ruled out any orthopedic issues. Then I came across the information on the statins and suspect that this is what has been causing my problems for the past 15 years. This is very disturbing. I am going to stop the statins and speak to my doctor about alternatives. Any suggestions?

  2. Joe

    I was in my early 40’s, started zocor at my docters suggestion. I immediately complained of extreme upper body weakness. Think it took days to realize the same objects i moved at work felt 10 times heavier. My doc said that is impossible, not a side effect of zocor. Probably was early time of distribution. Being an active person, carpenter and tennis player, I began to pull leg muscles at least twice a year, to the point of limping. I was in PT all the time. Doc says, keep taking zocor. after 5 years, I finally saw an article in the new haven register, saying that zocor can cause muscle damage in some patients. I called the doc, he said get off for two weeks and call me. three days later . I thought I was cured. But the muscle weakness never left. I ended up with torn rotators, replaced knees, detached bicep tendon. . I wonder how much of that was zocor related. But the real problem is, at 61, I am like a human jelly fish. My muscles cannot recoup after a workout and i am weak beyond my years. Sure they say age is the problem. But being a person that always had extremely strong legs and average upper body strength, I now have always tired legs, weak, and minimum upper body strength. After 5 years of that doc and zocor, three more years to follow, and the doc constantly wanted me back on it, I switched doctors. I often wondered if doc 1 had stock or stipends from zocor. Colesterol can be controlled in so many ways, I ruined my muscular system for nothing and i have to live with this every days for many decades. Nobody cares, nobody believes. But I know. I keep active and will keep looking for ways to combat this condition. I am about to embark of protein shakes, as that is need for muscle recovery in normal people. i am in a constant state of muscles not recovering.

  3. GREG

    I have been on Statins for 20 years starting at 10 mil then 80mil The FDA band Doctors using 80 mils down to 40 mils Everybody i know first side effect is leg cramps in the calf ,as soon as you come off Statins the cramps stop .Australia New Zealand and UK are starting to banned Statins
    The new CP receptor drugs coming ( i am on test with pfiser ) my LDL dropped so low they told me to only have one injection a month My side effect is numb leg calf’s now i worried that this will cause ALS ,but first i will check for the lack of B12 for Neuropathy as the circulation is good .The new CP drugs coming work again in the liver opening up receptors to remove LDL from your blood in a different way. One should drink a full glass of pure water before bed believe me i tried every wierd thing for cramps(this works) plus it been proven your body removes body fluids at night also your will not have a heart attack by drinking water at night just my thoughts which might help some one

  4. Holly

    I went through many months of debilitating unexplained leg, knee and foot pain. I had some hip problem before starting the statin (atorvastatin), but this also got much worse. It would get so bad that just getting up out of a chair, would be excruciating. I would have to stand there like 5 minutes just to prepare myself to take the first few steps. I was using a cane and wearing a knee brace. Had deep throbbing pain in my big toe, burning tearing pain down my IT band. Orthopedic doc found some minor arthritis, but nothing to explain this level of pain. Taking gobs of painkiller, trying soaking in epsom salt, foam roller, orthotics in my shoes….I was going to a chiropractor for therapy, which helped minimally, but I think the effects of the statin finally wore off.

    I had taken them for a few months when all this started, I quit for 2 weeks, still had the pain, so doc said statin couldn’t be the cause. Started taking again, things progressed. Quit again on my own. After I was off of them for about 4 months was when things started to really turn around for me. I feel so much better now. I cannot believe the difference. I was beginning to feel totally hopeless. Nothing was improving at all, the pain made no sense! I think the docs thought I was crazy.

    Look at some of the talks available on youtube about the cholesterol myth and the faulty science that they are using to keep bolstering the case for statin use. It’s terrifying, I hope the concerns and evidence will be brought to light via the mainstream press, so something is finally done about these greedy drug companies.

  5. Elmer
    Ottawa, Kansas

    Was prescribed a minimum lipitor dose after a stent, doctor claimed my cholesterol was ‘borderline’ high. After a year a half, standing up became difficult from thigh weakness. Knee pains added to the confusion, local doctor (aware of my meds) claimed age, (55) arthritis as cause, advised 12 ibuprofen daily. Bottle says 6 MAX daily, so I never exceeded 8. Ears now ringing and nauseus, I backed off to 4 per day. Mentioned this to my pharmacist, who first advised stopping the lipitor. A month later, deep thigh aches/ weakness remain, improvement slow but obvious. Seeing a more ‘natural ‘ doctor for muscle supplement suggestions. Worked as a construction electrician 30 years, avid cyclist into my 30s, had very healthy legs- til now. IMHO, strong evidence that these statins cause damage, perhaps by working TOO well. I read that cholesterol is used for muscle repair, blocking that appears to inhibit proper healing.

  6. Marie
    United Kingdom

    In February 2011 I had a heart attack, a blocked artery and was put on Simvastatin with no warning of side effects. After a couple of weeks I began to have pains in my arm muscles, did some research, was horrified at what I had read and stopped taking them. Doctor agreed. I began to lose weight which I was pleased about as I was 13st. 9lbs. By February 2012 I was down to 11st. 7lbs, went to Australia for a month, ate like a horse and came back half a stone lighter. Then a tight band began under my boobs, along with bloating, fatigue, memory loss and fuzziness. Doctor diagnosed IBS. Didn’t agree as I only had one symptom. No cramps. I finally made the connection after a great deal of research, with sugar being the culprit and statin induced myopathy. I had all the symptoms.
    I have now stopped taking all prescription medication and instead take CQ10,Omega fish oils, garlic capsules and magnesium. I eat a lot of chicken and vegetables, homemade soup, as there seems to be sugar in everything. Fruit and potatoes also seem to be a problem.
    Most of the time I have it under control and function reasonably well. I am now 9st. 4lbs. and continue to eat like a horse but thankfully I am not in pain.
    How any doctor can prescribe these life changing pills without warning is beyond me or official websites claim there isn’t a problem when we are proof that there certainly is.

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