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.

Join Over 68,000 Subscribers at The People's Pharmacy

Each week we send two free email newsletters with breaking health news, prescription drug information, home remedies and a preview of our award-winning radio show. Join our mailing list and get the information you need to make confident choices about your health.

  1. Roland
    Canada
    Reply

    I was also on crestor, lipitor, and fenofibrate, all caused severe muscle cramps and fenofibrate caused severe pain in lower and upper quadrant on the right side.

    Now I am using simvastatin for three weeks to six weeks after which I will have blood work done. I am getting headaches and pain all over so if it gets any worse I will stop these regardless of doctors advice. I also have arthritis and gout so it’s difficult to figure out on times what’s causing what.

  2. June
    australia
    Reply

    I was diagnosed with type 2 diabetes in 2013 and as part of my health plan was told my cholesterol was a bit high and was give Lipitor, since then I have suffered with extreme muscle weakness in my legs, dr sent me for X-rays but nothing came of that so they thought I was making it up. I was so exhausted all the time and frustrated with not knowing what was causing these symptoms. Then I researched statins and bingo, I stopped taking them went to the gym and did pool walking, I’m so happy that I never gave up trying to find the answer. I will never take them again.

  3. Linda
    Indiana
    Reply

    My husband was put on Lipitor for elevated cholesterol after heart attack. After a short period of time he began to experience long leg muscle weakness. We approached his dr with concerns about the statin being the cause. He told us it was possible & even increased the dose strength. I was so upset I fired the cardiologist on the spot after acquiring another one.

    Even after physical therapy and stopping the statin for 3 months nothing changed. After extensive neurological testing and a visit to orthopedic surgeon, no diagnosis was reached.
    My husbands weakness is so bad that when he gets down on his knees he has to pull himself up with his arms. His leg muscles are vertically uses less. I fully believe the statin caused his problem & the ignorance of a misinformed dr destroyed my husbands legs & his ability to work as an electrician. Is there any legal recourse to get the attention of the medical field?

  4. Ann
    United States
    Reply

    Six years ago, at the age of 55, I was put on Lipitor and after 1 month could barely crawl into bed at night. Knowing the side effects of this drug, I told my doctor I needed to go off statins all together. It was recommended that I try Red Yeast Rice. I take 2400 mg of red yeast rice daily and haven’t had a problem with my cholesterol since.

    A few years ago my mother decided to give it a try, but was afraid to tell her doctor that she had stopped taking her Lipitor. She also has had wonderful cholesterol numbers since taking the red yeast rice.

    Her doctor is now aware that she quit the statins, but still won’t give any credit to this supplement for her low numbers. Both of our numbers were borderline high and the red yeast rice worked for us. I don’t know if this would work for someone with extremely high numbers, but I have to say it is wonderful to not feel like a truck has run you over every night, which is exactly how I felt on Lipitor.

  5. Chaouki
    Melbourne
    Reply

    I am 55 years old I started taking Lipitor 20 mg for 3 years 2011 started to have symptoms of ALS left drop cramp in my legs Ck 2200. I stopped taking Lipitor my symptoms get worse initially. I have been diagnosed with statin induced autoimune myopathy. I had the treatment no improvement in June 2013 the neurologist told me it is lower motor neurone disease my CK still elevated around 500-600. I am in power chair all the time I told my specialist all due to Lipitor but how can you prove it? I feels I have toxin in my left foot more than right from the beginning. I used to be very active. I worked as G.P and C.M.O in accident & Emergency.
    Now I am at home suffering and my family too,
    Thanks for Lipitor and Pfizer for my brilliant future

  6. Gill
    Southend (UK)
    Reply

    I started taking statins in August 2006 by that Christmas I was suffering with severe tiredness, could hardly get out of bed memory was foggy and I couldn’t think straight. I had to be signed off work for 3 months. I was then diagnosed with M.E.

    I watched a programme on TV from the USA that said people who had been taking statins were all being diagnosed with M.E. and the symptoms were irreversible. I had to attend a clinic for cognitive behaviour and learn how to pace yourself.

    I went back to work but over the years I have become worse. I continually had to be signed off sick, waiting to retire the government put the retirement age up and I wondered how I was going to work for another 2 years. Thankfully I was made redundant. I am still worsening.

    During this time my mother was put on statins in her 80s where she became unable to walk and went on to have dementia. She was a very active lady until I think she took statins. (not proved) she died 2 years later. She had symptoms of Parkinsons but they were adamant she did not have it, so what did she have?

    The sad thing is you look ok and nobody believes you genuinely feel ill. My place of work were one of these people. I have severe insomnia and depression, counselling does not help.

  7. Jane
    Richmond Va
    Reply

    We are stuck with the medical profession prescribing statins until another effective cholesterol lowering drug is developed. I am angry that I was not given all the information about side effects and then given a choice as to whether to take them or not.

    I just blindly took them because my doctor said I should and my life has been dramatically changed. However, at this point, I am more interested in finding out what other drugs are currently being developed to reduce cholesterol and when they will be on the market.

  8. EJ
    Ohio
    Reply

    I, too, have developed severe muscle problems after taking generic Lipitor. My doctor prescribed the drug for me after I had a heart attack from HBP and two blockages. However, I did not have high cholesterol. He convinced me that I needed to take the drug to prevent further blockages. (I had two stints implanted following the HA.)

    Within a month, I started experiencing severe muscle pain in my calves. I did some research and found that cholesterol lowering drugs caused muscle damage. I quit taking the drug. I started feeling better almost immediately.

    However, when my Cardiologist learned of this, he about went through the roof. He said I had to keep taking the drug or I would have another heart attack. Even gave it to me for free. Said it did not cause muscle damage. My GP sang the same tune. Together they convinced me to keep taking the drug. Now, I use a walker. I used to be very strong. Now, I cannot even lift a gallon of milk. I keep getting worse.

    My Cardiologist is scheduling a test to determine blood flow in my legs–another unnecessary test which I will now refuse. I am glad I found this website today. I am now convinced that my problem is definitely the Lipitor. I will never take again. No Lipitor. No cholesterol lowering drug. I just pray my problems are not irreversible. I also pray for all those who have shared here. I wish I had seen this site months ago. God bless.

  9. Dr. L. W. S.
    Ocala, FL
    Reply

    My father clearly suffers from the effects of Statin drugs, prescribed even though his Cholesterol was not that high, about three years ago. Until last year, my father walked five miles a day but after a fall, he went to the hospital, came back and began driving again, was fine. However, a couple of months after that, he rapidly deteriorated, fell multiple times and all his doctor did was give him a walker and chalked it up to his fall and never stopped the Statin drugs. When my father arrived at the ER a month ago, the neurologist immediately ordered to stop the drugs and now my father is in a rehabilitation center where he is improving minimally after now 20 days but we have hope. However, we know for a fact that some of his improvements, in gaining weight, and even the slightest movements, are due to the fact that he is no longer taking Statin drugs.

    I am glad we researched the affects and found this website. It is appalling to me that this drug is allowed on the market when clearly so many people suffer irreversible consequences. To add insult to injury, when I spoke with my fathers primary care physician yesterday, he told me that there is no hope for my father, and to expect the worst! He should loose his license immediately for telling me that on the phone without ever making any effort to help my father. He gave up on my father a few months ago, which is why my father was not getting the right therapy until he went to the hospital and they ordered intense therapy and rehabilitation. Shame on the primary care physician and we will NOT let this go!

  10. Ann
    Michigan
    Reply

    My son was a thin, healthy, athletic, 32 year old when he began having muscle atrophy in his left arm. At that time his Doctor told him to stop taking the Lipitor that had been previously prescribed to lower his cholesterol. His cholesterol was 300 so he had been put on the highest dosage. His symptoms persisted and continued to spread into other muscles and he was diagnosed with ALS. He died three years later (that was eight years ago). I have just now heard of the possible connection ALS may have to the statin drugs. Our family has a history of high cholesterol and heart disease, but I would never go on a statin drug. I am instead eating a plant base diet.

  11. melvin
    michigan
    Reply

    I started taking simvastatin 4 years ago. I started have leg pains at night that progressed to throbbing pain from my thighs to my ankles. I went to a PMR Specialist and he told me to stop taking the medicine. He also told me to stretch in the mornings before going to work and go back to work. Unfortunately I am unable to stand for long periods of time. So returning to work at this time is not an option. The specialist never gave me anything to help with the pain. Its been 2 weeks since I have stopped taking simvastatin and my leg still ache. The throbbing pain is gone but there is still pain. My family doctor tells me there is nothing more she can do. So now I’m trying to find someone who can help me. I am currently doing physical therapy but that ends soon. It feels like no one really believes i am in pain. How do i explain this when I don’t really understand. I am going to a new specialist this week. I hope, no pray I can get answers but more importantly I get the treatment that I need to get better.

  12. Marja VH
    amsterdam
    Reply

    There is nothing wrong with a high level of cholesterol. I was a very healthy, sporting, dancing woman.
    Crestor has made me nearly an invalid. I couldn’t walk anymore after 6 years of the lowest dose of Crestor. I stopped with Crestor after I had given everything up;, dancing, sport
    and even walking. First I thought it was my age, 59, then I thought it was the yoga. Nothing changed until I stopped taking Crestor. I am glad that I was so stubborn to tell the doctors I would only take the lowest dose and only once per two day, no matter the outcome, or if it fitted their ideas. I always have problems with medicines.

    I turned into a cripple, a being that wanted to die, heart problems, muscleproblems, sexproblems, depressed.

    Now that I stopped I feel much better. I can walk again, though I am still very weak in the muscles. Knees are still not really ok, and painful. Sometimes my whole body still hurts, but mostly that is gone.
    I for sure hope to get better. I took statins because I was afraid I might get sick and be a pain in the ass for my relatives. But not for myself. I never believed in it. I’ve seen numerous doctors, but no-one listens to my story, or worse; they fight it.
    The whole pharmaceutical industry is just about money. Lots of money. Not about you,

    • Babs
      Illinois
      Reply

      To be truthful you really don’t want my true version. I have suffered for 10 yr. on zocor for 2 yrs ,my dr would not take me off. Tore the l-lig. dislocated hip joint. Also live with that pain. No doctors seem to go there nor lawyer. Muscle relaxers help some, stretching helps but not on relaxer at this time having a lot of trouble doing any thing god help them if my daughter figures this out, she is very good at debate and research, her father died less than a year before this started. On me something we are both doing. I have no one to help me. My daughter does not live near me. She should be able to live her life and the drug companies should take care of all of us. I am tired of not be able to live. When you talk to dr they do not understand. Because they have not research these drugs before using. God bless all the greedy companies they will see their end too!!!!!!

  13. Glenn S.
    United States
    Reply

    Add my story to this list. At 55 years old last spring I acted and felt like I was 45. In perfect health all my life, I had some blood work done that showed a slightly elevated cholesterol level. Last May my Doctor recommended I start Crestor. In less then a week I was having bad muscle cramps. I quit the poison in three weeks as the cramping worsened. It’s never stopped. By September, I was exhibiting stroke like symptoms that included marked left side weakness, slurred speech and balance issues. I was reffed to a neurologist who believes I am sufferings from ALS. For a second opinion I now am scheduled for an appointment at the Barrow clinic in Phoenix in a few weeks. I pray this is reversible and something other then ALS. My advise. Tell everyone you know to never risk Crestor or any statin poison.

  14. helen a. c.
    Reply

    My husband of almost 55 years passed away Dec. 1, 2014 from ALS. He took Zocor for 12 years and I am convinced that the statins caused the ALS. The Drs. will not tell you the dangers of Statins. I stopped taking the Zocor when my husband stopped his, but the damage was already done on him, in my opinion.

  15. Patricia B.
    florida
    Reply

    I was first given Crestor in 2005, and after 3 weeks, I stopped taking it due to arm muscle pain, and headaches. Because of a slight A-fib problem I was sent to a cardiologist, he told me I needed to take Crestor and after 1, week my ankles hurt so bad I could hardly stand up. I stopped again, the doctor was highly skeptical of my reason, so I changed doctors. That was in 2008.

    I then developed foot drop, neuropathy in my ankles, my left fingers and wrist. I was finally diagnosed with sporadic Inclusion Body Myositis in 2013 using the biopsy for proof, and probably from exposure to the Crestor. I am now in a walker, leg braces, have dysphagia, choke and fall down, cannot open anything, or hold a mixing bowl. Had to hire a housekeeper, spend $ on therapy, and will eventually be in a wheelchair and move into assisted living.

  16. karl
    hawaii
    Reply

    I took the statins also. I was unaware of problems. What a mistake. I drank grapefruit juice with it also. I have had 2 muscle ruptures 1 in left thigh and 1 in right upper arm. I now have type 2 diabetes which started about the same time. I am controlling it without medication, thank you very little doctors. I now have severe muscle weakness. I have Parkinson’s and with the muscle problem it is more like ALS which my uncle died from. Nice right. Do not take anything without researching it first. My sugar is getting under control naturally. Our medical community has become legal drug pushers. There are better ways, now I know. Cholesterol levels is a huge fraud to the American public. More statins, more type 2. Look at the rest of the world.

What Do You Think?

We invite you to share your thoughts with others, but remember that our comment section is a public forum. Please do not use your full first and last name if you want to keep details of your medical history anonymous. A first name and last initial or a pseudonym is acceptable. Advice from other commenters on this website is not a substitute for medical attention. Do not stop any medicine without checking with the prescriber. Stopping medication suddenly could result in serious harm. We expect comments to be civil in tone and language. By commenting, you agree to abide by our commenting policy and website terms & conditions. Comments that do not follow these policies will not be posted.