statins help or harm

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. Marie
    Connecticut, USA
    Reply

    I have been diagnosed with statin-induced recognizing autoimmune myopathy. I took Atoravastin 40 mg for a couple years. My doctor said it was one of the safer drugs. Stopped the Atoravastin over 6 months ago but the progression of the disease has not ended. Can’t do stairs, get out of chairs, and if I fall down I’m in trouble. I am now on methotrexate and prednisone, etc. I am a 65 year-old female who was hoping to hike and bike when I retired. I feel like my life is over. Why can’t we get together and sue these people?

  2. Lisa
    South Carolina
    Reply

    Took Lipitor for several years with no problem except muscle cramps once in a while. Dr. switched me to Crestor and a stronger fish oil After a couple of months I had a lot of swelling in my legs but no pain. I suggested eliminating the new medications but Dr. did not agree so the process of many different test started. Very soon I started having severe pain in my legs (mostly upper), and my muscles seemed to be deteriorating. After approximately six months I stopped taking the fish oil, and after 8-10 days the pain in one leg lessened.

    At my next Dr. appointment I told him I wanted to stop Crestor. Although he did not agree with me, he gave me a non-statin drug. Within 8-10 days the severe pain in my legs stopped. I have been off Crestor and fish oil for approximately seven months now, and the severe stabbing pain has stopped. I am still having a lot of pain in my leg muscles. When I walk some distance my legs will hurt, and muscles seem to knot up. When I sit for a couple of hours, getting up and walking is becoming more difficult. When I go to bed, I never know when I will have to get up because my legs will be hurting from the pressure on my muscles.
    All the above is affecting my physical and mental body, and I don’t know what to do.
    After taking 200mg of Q-10, as some suggested, for two months, it has not helped.

  3. mary
    Michigan
    Reply

    my husband has been going through muscle problems can no longer walk hardly at all cannot get out of chairs, bend over without falling down, dressing himself has become a challenge. He was taking atorvastatin. 10mg. they took him off of it at last. Now they gave him prednisone. After 12 weeks no change. They are taking him off of that. We are going to Cleveland clinic to have them look over everything, in hopes of getting some answers as to what can be done. His original diagnosis was polymiosasis now they are saying it isn’t. That atovastatin is probably what is wrong. Is there someone to hold accountable for this?

  4. H Munster
    Reply

    I do not have heart disease, but high bo. I have high bad cholesterol, low good cholesterol and really high triglycerides. This runs in my family. Eventhough I am 50 pounds over weight, I had always lived a fairly active life. I rode my bike in the summer, walked a lot.
    Anyway, ten years ago started statins. First Zocor, then Crestor, now lipitor. Every time I go on statins, I have flu like symptoms, severe fatigue, muscle weakness and severe joint pain. My doctor(s) have told me my pain is normal aging (i am 55).
    What good is living longer if you are in constant pain and want to sleep all the time? I think most doctors just work for big pharma. Went off Lipitor for six months and felt better. Last checkup, my cholesterol was sky high and Dr. insisted I go back on statins.
    This sucks.

  5. Diane
    Dobbs Ferry NY
    Reply

    In 2015 my perfectly healthy 76 year old mother lost the use of her arm and simulataneously went into heart failure from severe calcification of her abortive heart valve. When I found out she was taking statins for 6 years I had her cardiologist take her off the drug. She had an aeortic valve replacement but the neuoryopathy continued to spread. My mother is now paralyzed from the neck down and bedridden. She lives with my family now, and I have had to leave my job to take care of her.

    The neurologists have no clue to what this is. They put her in a general category of MND but she does not have ALS as that has been confirmed. Her life is ruined, and our family life has been destroyed. I Know that 6 years of overdosing her with statins destroyed her life. She suffers every second of every minute of everyday! My family is destroyed, as we are witness to this horrific atrocity of men who calll themselves doctors. Statin drugs are nothing short of torture! My focus is to keep her safe and as comfortable as humanly possible. My goal is to expose this human atrocity !!

  6. Jani
    Lancashire
    Reply

    My husband was on Pravastatin for about 10 years, along with several other drugs. He originally went to the doctor with slightly raised blood pressure. He thought the statins was for that. Over that time he slowly became more infirm and had trouble with pains in hands, arms, feet and legs. He ate a very healthy diet, was extremely active, working usually 7 days a week as a sculptor, painter. Two years before his death in 2017 his pain and infirmity increased, despite exercise, his muscle mass continued to decline.

    His GP thought he had Parkinsons, the specialist he was sent to finally confirmed he had not. In the end, he could not feed himself, could not swallow, clear his throat, speak. Got pneumonia. Despite stopping statins it was too late. His cholesterol was very low. He was 88 but had a very poor last two years. In the last week food and drink withheld whilst tests and scans for reasons behind his incapacity continued, with no results. Angry.

  7. mark
    salem Or.
    Reply

    I’m a 62 yr young man and was on 3types of statin drugs for 7 yrs. Simvistatin, Pravastatin, and atorvastatin, The side effects were permanent and I was not even told by my v.a. doctor he was putting me on them .I am still to this day disabled.My first symptoms were brain fog and muscle weakness and as time went on I developed joint pain , and severe anxiety attacks plus G.I. disorders, as time went on I developed severe leg sciatica and had to have back surgery and waited 2yrs for it.

    While waiting my leg pain got so severe I went into a wheel chair until I got surgery which triggered more symptoms which were food allergies muscle pain in my eyes also my depression got worse, my back surgery was a failure.

    I have developed a very short temper and I still have chronic fatigue brain damage food allergies leg cramps back pain of course and a extreme loss of my quality of life. My advice is DO NOT TAKE STATINS YOU COULD LOSE YOUR LIFE!!!!!

  8. Peggy
    Tennessee
    Reply

    A physician assistant put me on Atorvastatin January 2108. I took myself off it after taking it for 5 months. I have been having pain in all my joints and feet for several months and thought I was getting arthritis. After my appointment with the P.A. in June 2108 and him being upset because I had quit taking the drug, I looked up the drug on line and realized my problems are all related to taking Atorvastatin. Is there anything that can be done to reverse the muscle and tendon damage? I am changing doctors and will see my new one August 3, 2018, and hopefully he can give me some advice.

  9. Kathryn
    WV
    Reply

    My original doctor ( who retired at a young age a few years ago) originally gave me simvastatin. I developed this hacking cough, so she switched me to something else. Newer doctor of the last several years put me on pravastatin. Slowly, my feet have gotten more numb, and it went up my leg. Had my first numbness attack in the early 2000’s. They did the electrical conduction tests. Everything normal. I had had pre-diabetes at that time which 3 years ago morphed into Diabetes. Had no idea there was a connection between Diabetes and statins. Neither did either one of these doctors mention that I should be alert to any muscle problems.

    Went on the annual doctor visit a month or so ago, and she switched me to 20 mg. of Lipitor. Well, I noticed more numbness now in thighs and buttocks with terrible cramps in my hands almost constantly, only intermittently with past statins. Then, another ‘numbness attack’ where I now suddenly cannot get up off the toilet or out of a chair without a major Herculean effort using my arms, etc. This change was, again, very sudden to me.

    Stopped the statin immediately and called the doctor who got back to me two days later telling me to get off the statin and that was her only advice, information dispensed through her nurse. I had told her nurse when I called in that I was very frightened about what was happening to me and so much so, that I had ordered assistive devices for my bathroom and a cane, but my doctor has not asked me to come back in to see her.

    I am going to call her again today to ask for a referral to a neurologist. I read here that this may progress even without the continued use of statins. Also, have had ‘asthma’ and now possibly COPD developing for the last several years.

    Why wasn’t I ever warned about the connection to all of this with statins?

  10. Danny
    Salem, NH
    Reply

    Add me to the list. After having stents put in for a heart blockage, but not a heart attack, I was subsequently on 40 mgs of provalcol for about 4-5 years with no apparent side effects. When my primary doctor moved to the West coast a new doctor (a cardiologist) took over my primary care & after six months said my cholesterol was up slightly & that he was putting me on a more powerful statin and that he was doubling the dose. I took only 29 of the 30 doses of 80 mgs of simvastatin & went in for a refill. Mentioning to the druggist that my legs were a little achy & I felt weaker, he said to tell my doctor. Calling the office, the nurse said to stop taking it.

    I still have the “last capsule” of that 7/24/08 first prescription, as well as the full refill, & have never spoken to that cardiologist again. A rheumatologist who had moved from Europe to MA said he suspected the simvastatin would likely be the trigger for my symptoms. After that, test for nerve problems from a MA neurologist turned out negative, but necropsy turned up in a muscle biopsy. A trial of Prednisone to stop the progress had no success. After seeing a number of doctors a respected muscular neurologist in MA. diagnosed my condition as “scapuloperoneal muscular dystrophy,” due to the apparent loss of muscle around my shoulder blades. He said there was no connection to the simvastatin.

    Shortly afterward the FDA came out with a declaration that patients “should not” be prescribed 80 mgs of simvastatin unless they had been on it successfully for a long time. Either my timing was unfortunate, and now I’m doomed, or perhaps it was a change of fast food brands that has done me in. On my last visit, the muscular neurologist told his assistant and trainee, that I have managed to figure out how to manipulate my body by pushing on my cane and pulling on other objects at the same time. otherwise a normal person would not be able to get out of a chair.

    MY balance is such that the least twig or small variation under foot throws me off, and I can easily fall. I must lock my knees to walk with one or more canes, and the least bend of my knees will cause me to collapse if not holding on to something solid. When I fall, I do not have the strength to get up or shift myself around. There is no upper body strength to get into or out of a normal wheelchair. It’s too late for me, and obviously a great number of others, but at some point I hope the world is made aware of the real effects of the pharmaceutical companies and the profits they make, unhampered by the destruction they leave.

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