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. Diana

    I was put on Lipitor in March 2017 after a mild heart attack w/ stent. Dr. told me I would be on it for the rest of my life. By October my right arm & shoulders were so stiff and weak I had a difficult time getting dressed. At that time my other (alternative) Dr. told me to stop taking it. He said take Niacin, Red yeast Rice & DHA instead. In late January a blood test revealed that my cholesterol is right in the middle. Just fine. In addition, a read a multiple study report in the American Journal Health Systems Pharmacology, 2003;60(11) about policosanol, derived from sugar cane & other plants. It has minimal side effects and lowers cholesterol at a similar rate to statins. This is a safe, inexpensive, OTC nutritional supplement. Doctors should be required to disclose associations, including stock ownership, in pharmaceutical companies. Or better yet, prohibit doctors from practicing if they have any associations with pharma.

  2. margie

    I had one episode of high blood pressure 5 months ago when under severe stress. Went to ER and they said I would be fine and just check in with family doctor. Hospitalist said until your BP get around 200/100, you should be OK. Family doctor put me on Losartan. Still had the same problem, high blood pressure in am so he added metoprolol succ ER. No good, still high BP in am. Sent me to a cardiologist who had me double my meds and added on Zetia which was supposed to avoid problem. I went through this for 2 weeks and got so bad with my neck shoulder blades I went off everything 2 weeks ago. The muscle pain is still there. I should never started this and if I can keep my BP down to 156/80 I will never take another one of these dangerous, life threatening pills.

    There need to be a large class action suit against big pharma AND the doctors who prescribe this poison.

  3. Wayne

    I had serious reactions to statins that caused muscular failure, dangerous blood pressure rises, lubg inflammation and much more. It nearly killed me. I recently made the mistake of accepting Repatha as a substitute. Within 7 days I developed twitches in my thighs, spasticity in my legs, and weakness. I went of the drug but it takes 3 months to clear your system. I read the Amgen study of its own drug and lo and behold more people died on the drug then the placebo over only 2 years. I suspect they stopped the study because the comparisons will only get worse over time. How these big pharma companies are killing people and getting away with it amazes me. The fda is owned by big pharma. Its all about the money.

  4. DANA J M


  5. Mike
    VA / NY

    My father took Lipitor for three years starting about 15 years ago and took himself off the medication against his doctor’s wishes after experiencing muscle pain. He swore for years that the Lipitor caused his ever worsening muscle debilitation. He went for numerous tests over the years and all proved nothing conclusive. His family physician only recently conceded that Lipitor was most likely the cause of his symptoms. Six days ago was the first time he could no longer stand up on his own and that evening he tried to take his own life. He is still in the hospital.

  6. DeAnn
    Lubbock, Texas

    I took 10 mg of crestor for 14 days and developed severe pain in my right leg. I stopped the medication and still after 4 weeks I am still suffering and am unable to bend or squat down. The FDA needs to take this horrible drug off the market.. I pray that the residues of this drug will get out of my system and my leg.. and I can hope for repair to my muscles in my leg.

  7. Margaret Fairchild

    I currently am not taking anything for my cholesterol but it is high. I actually feel fine. Am very leery about taking it, as I saw what it did to my late husband. He ended up with diabetes from the different meds. Actually, it lowered his numbers but not significantly. His glucose reads were always high with the medications, but in the last 2 years he actually was weaned off of some of the meds. Then his levels went down but the damage was already done. Plus, my daughter has friends who have had mothers who have landed in nursing homes from the side effects, so I will try more natural ways. I am not a very big eater and do not eat a lot of cheese or eggs either.

    • Tracy
      No. Calif

      February 2017, after suffering a mild stroke (which was related to family stress issues) the ER doctor said that even though my cholestrol and BP were normal he wanted me to take atorvastatin. He called it preventive medicine. After only two weeks my whole body ached from neck to feet. I stopped taking this med. It is now just over one year, and the statin poisoning is still in my body, and my legs still ache. I now need a cane to walk.

  8. Joe

    Are there any class action law suits regarding these issues?

  9. CA

    Seems only the muscles in arms, legs, feet etc. those that are used outwardly in exercising have been discussed. Have others reported, experienced or wondered about the affects on other body muscles that are more internal e.g. digestive tract muscles, cardiac muscles and on? Any information or directing me to articles discussing this would be appreciated.

    • ihsan
      monroe mi

      MI. I was on STATINS for over 20 years. I had muscle aches and pains that were bothersome but not disabling, so I continued taking meds and dealt with the pain. When i later on for no of years I had fatigue exhaustion, lack of energy, difficulty breathing with walking and on physical work. Also had flopping of head, food getting stuck in throat. when I developed severe back pain I stopped the drug and with in days pain almost disappeared and gradually over a few weeks breathing improved, fatigue exhaustion, swallowing problem resolved.

      My vocal cords were affected and I could barely speak. All of that has markedly improved or resolved except weakness of large muscles that I can say is only 75% better. What I mean to say is that it had affected many systems including breathing muscles and the rib cage, vocal cords, neck muscles, swallowing due to esophageal muscles and off course major muscles mostly of tha legs and arms and certainly all muscles to some extent. Blood test an muscle biopsy did not show any inflammation at any time.

  10. Carmel

    Seems only the muscles in arms, legs, feet etc. those that are used outwardly in exercising have been discussed. Have others reported, experienced or wondered about the affects on other body muscles that are more internal e.g. digestive tract muscles, cardiac muscles and on? Any information or directing me to articles discussing this would be appreciated.

  11. W N

    I had a coronary artery bypass in 2016 and was put on 80 mpg lipitor. Was taken off it for a couple of months then put back on it. Had lots of weakness; my right leg burns all the time; my feet, toes, and hands, have shooting pains and toes and hands; Horrible pain in my right hip joint. Had a couple tests done: x-ray on hip, ultrasound on rt leg, but showed nothing. Also have severe shortness of breath but I used to smoke and have COPD. I quit smoking 17 months ago. I believe lipitor is causing the burning in my leg and the shooting pain in my feet and toes and hands. I am going to try and checked for diabetes and ALS..

    • ihsan

      The shortness of the breath will get blamed on coronary artery disease and they will keep on focussing on lung and heart , but statins definitely affects respiratory muscles and your lung function will show some restriction along with obstruction., with marked decease in vital capacity.Neuropathy like symptoms can all be due to statins and the whole picture definitely looks like ALS , MS even Myasthenia. rapid disappearance of these symptoms or improvement in days to weeks on stopping the drug.blood test may all be normal and not show any muscle injury.

  12. Jeanne

    I have been on livalo for about 2 years. For the last two months my legs are very weak and pain in back severe, it just dawned on me it may be the statin so I discontinued taking it. Have appointment at pain clinic for shots to see if helps i am praying that this can be reversed but reading all the comments I’m getting depressed. I hope I stopped in time to reverse the damage! Don’t take statins!!’

  13. May

    10 years ago I had stents put in, at 47 years old. My cholesterol was low at the time but I was still put on statins. Within the week of the first one, I couldn’t walk, my muscles were so weak. I tried everyone there was, the doctor kept giving me samples to try. I finally got a new cardiologist and got off the statins. Each year I have gotten weaker, from head to toe. If I go walking then I’ll be so weak the next day, I can’t do anything. It’s hard to walk up stairs and sometimes it seems like it’s hard to breath with weak muscles. Sometimes it’s hard to chew my food, I’m so weak. So many tests over the years and medicines and nothing has been found. I researched and found my symptoms are those of ALS so this article is so uplifting. I’m taking this information to my cardiologist and asking for tests. My fear is I’ll be so weak one day as the weakness is progressing, I’ll end up in a wheel chair.

    • Gary

      Seventeen years ago I was on this statin. At 50 years old at the time, my shoulders froze. Couldn’t put a coat on by myself. Got cortisone shots at NYU Hospital. The pain disappeared in hours. I went off the statin and that problem never returned. I have been on and off statins ever since because of high cholesterol (280 untreated). Every time I’m on them, I pull or even tear a muscle. I play softball and just pulled a groin muscle after being on Crestor for 3 months. 4 years ago, I tore both groins after going on pravastatin. I feel like an idiot doing the same thing and getting the same result but doctors always insinuate it’s unrelated. It’s NOT coincidental!

  14. lt

    I’m 57, pretty active. always working out, hiking, weight training, walking,etc. until about 3 years ago, I started on 10 mg. of pravastatin and experienced some muscle soreness. Nothing I couldn’t handle. I did notice over time (2 years), that I was losing my muscle tone and stamina. I attributed this to my age and not working out as much and not eating right at first so I stepped up my workouts.

    Went hiking one day and experienced knee pain and weird electric like sensations running down my legs. The next day, I went grocery shopping and was so unsteady I had to use the cart so I wouldn’t fall. Legs felt rickety. A week prior, I had my best numbers for cholesterol, triglycerides but, felt the worst!

    I stopped taking statins that day. It’s a little over a year now and I’m recovering everyday. I don’t feel like my stamina or strength is back to where it used to be but, a lot better than on statins.

  15. Jason

    I took Atorvastatin for a few years and then started getting horrible leg cramps. I was told that I was dehydrated so drink more. I drank lots of powerade and it got no better. I stopped taking the Atorvastatin and the cramps went away within days. My doctors kept telling me I needed to take something so tried 3 other ones. Each time the cramps returned within a few days. I haven’t taken any for 2 months and never will again. At this point my leg muscles are very weak. I can’t walk very far without my muscles hurting and feeling like they are worn out. I’m hoping it will get better but it has been 2 months and I may be like this the rest of my life or worse. Since my problems started, I have talked to many people that stopped taking statins for similar reasons. They are not good for you. The pharmaceutical industry should be held accountable.

  16. Lindy

    I was fine until my doctor had me double my dose of statin last year, and I’ve been in pain ever since. Both of my brothers have also had bad reactions to the drug. I’m turning 50 this year, but I move like I’m 80. It’s hard to sleep at night because I hurt, and it’s hard to get out of bed every morning. Just walking and climbing stairs hurts. Sometimes it’s my thigh & shoulder muscles, sometimes it’s the joints. I stopped taking it at least 7 months ago. I wish I’d never taken it, because I’m miserable pretty much all the time now. :/

    • gardensnake

      Sorry to hear this. Are you recovering since you stopped with the statins?

  17. Sheila

    I have been taking prevastatin for several years. Am only now experiencing muscle pain and weakness in my legs making it very difficult to get up from a sitting position. I feel leaden when I walk doctor just told me to lay off the statin for a couple of weeks to see if things get better.

    Am wondering why, after all these years, I’d have these side effects? AlwYs understood they occur relatively quickly after starting the drug? Am
    I wrong?

  18. Toni

    My husband was diagnosed with necrotizing autoimmune myopathy in May of this year, he took lipitor for a few months after his heart attack in late 2014. He began having difficulty getting in/out of the car in 2015 and his PCP had him discontinue the medication. He is unable to walk on his own, or to get up from a chair, this disease has taken his indendence from him.

  19. James

    A lot comments that are 10 years old. My symptoms started in 2016 and still happening today, is this irreversible ? Treatment is helping a little but the “war” is still raging in my muscles.

  20. Woody

    My Dr prescribed Crestor for my high cholesterol and I started having night cramps in my thigh’s so bad I would have to jump out of bed in severe pain. I told my Dr and he switched me to another med. But now my thigh muscles are so weak getting up from kneeling without using my arms.

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