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. Sherica
    Georgia
    Reply

    I had neck surgery c3-c7 and 2 days in the hospital I had a heart attack and a stent was placed I was put on lipitor for months until my cardiologist took me off because of my leg pain. Shortly after I went to my primary care and she put me on livalo and the pain continued and worsen. My cardiologist took me off this and said it’s the statin drug that’s causing the pain. I returned to my primary care and once again informed her of what my cardiologist suggested and took me off. She then decided I take Zettia because I’m a high risk and said it was a cholesterol meds but not a statin. Confused Have anyone taken Zettia and any side effects. ?

  2. Tara R
    Reply

    I was diagnosed with Parkinson’s disease a year ago at the age of 69. For several months I had noticed tremors in my right hand and the shaking of my right foot when sitting, as the disease progressed I totally lost balance.

    Neurologist had me walk down the hall and said I didn’t swing my right arm. I had never noticed! I was in denial for a while as there is no history in my family. I used amantadine, Carbidopa/levodopa and physical therapy to strenghten muscles all failed. In 2016 a friend suggested Newife Heral Clinic who have successful heral treatment for Parkinson’s disease, I contacted the heral clinic via their website and purchased the Parkinson’s disease herbal supplement, I used the herbs for 7 weeks and my symptoms were reveresed. Its been 6 months no sign of parkinson’s disease, contact this herbal clinic via their email (newlifeherbal @ gmail. com) or visit their website (www. newlifeherbalclinic. weebly. com)

  3. Anita P
    Reply

    Statins should be banned until more thorough research completed, Big Pharma should not offer inducements for the Doctors Etc. to prescribe them.
    They are ruining lives including mine.

  4. SAM
    Las Vegas, NV
    Reply

    My doctor put me on Red Rice Yeast, 2x600mg capsules 2 x day and 1-1000mg fish oil 2x day, to treat total cholesterol at 246. About a month into taking RRY, just finishing one bottle or 120/capsules I noticed my lower legs really cramped, worse in evening even kept me up three nights in row. Then it spread to lower back, developed chills, nauseous, agitated, could not think. Off RRY, now for about two weeks.

    Still very nauseous, chills, right lower/mid back pain, cant think clearly, dizzy. Worsens late in day after full day work. I work in office so sit a lot and try to get up/down every 30/minutes. Feel horrible most of the day, not myself…trying to work thru this drinking extra water, fish oil, CoQ10, and my regular vitamins. This treatment has really affected me and I hope it calms down soon. I would not wish this on anyone.

  5. Mike Espo
    Reply

    At 58 years old my primary doctor finally convinced me to take a statin to reduce my LDL…total cholesterol was 225. I took a low dose of simvastatin for a little over a year and noticed weakness and muscle cramping. I woke up one day with piriformis muscle syndrome and lost the use of my right leg. Prior I was playing racquetball at a championship level. I instinctively stopped taking my meds and started to rehab my leg and am back almost 90%. Walking over a mile 3/4 days a week and making nice progress. WILL NEVER TAKE ANY OF THESE CONVOLUTED DRUGS EVER AGAIN..

  6. J
    Arkansas
    Reply

    I had been on Crestor for 10 years. I had some muscle aches but took Celebrex to fix that. Last year at age 73 I had a heart attack. Drs raised my Crestor from 20mg to 40 mg. Within 3 months I was in the hospital, my kidneys working only 15%! I almost died! I had rhabdo. Muscle breakdown that clogged up my kidneys. I did recover but can never take a statin again. I have inherited high cholesterol so am trying the new drug Repatha although it is so expensive even with insurance so I may not be able to continue. Some minor side effects. We are all guinea pigs for these new meds!

  7. william
    porthcawl
    Reply

    I’d been having trouble with statins, ie muscle stiffening and soreness. I was put on Pravastatins last June and was pleased that none of the above symptoms returned. However I was also walking between 30 and 40 miles a week. Slowly but surely I began to develop a stoop which has got worse. I stopped taking them in June but no improvement. A doctor suggested if it was statins the symptoms would have gone by now. Today I’m seeing a back specialist.

  8. Barbara
    Portland, OR
    Reply

    My boss developed IBM after taking Lipitor for less than a year. He was originally diagnosed with ALS about 10 years ago. He went to Philadelphia, but there is nothing they can do. He is presently considering trying a tincture derived from marijuana to try to reduce inflammation. His doctor is skeptical. It is legal in Oregon, so I will update if it helps at all.

  9. Joe
    WA
    Reply

    Hi I was using statins for about 10 years. Noticed soreness in hips and weakness in my leg muscles. I stopped taking them for 45 days most of my pain went away and strength came back. Decided to try the statin again just to see if the weakness would come back also due to all the hype about strokes when not on statins. Now i cant get out of a chair without using my arms and can not get up from a squat. Im stopping and will not take another statin im 56 years old and have always been very strong.

  10. tammy
    connecticut
    Reply

    My husband went to the hospital-his sugar was 1642(not a misprint) and they put him on statins because of his cholesterol.

    Today, he is so weak he can’t leave the house-it hasn’t effected his breathing or anything yet. The worst of the pain is in his neck, shoulders and back. He trembles if he has to reach to pick up anything. All of this happened after he took the statins for a year-the pain started almost immediately-but the drs insisted this was something from his diabetes and for him to stay on the statins. He went to a neurologist-but they never even did a muscle biopsy-they just treated him like he was crazy-because statins couldn’t do this to him-right?

    I am so angry-I lost my husband 8 years ago-and all there is left is this broken empty shell-and there is nothing I can do for him.

  11. Ann
    Panama City, FL
    Reply

    I was on Atorvastatin for three weeks when I found it brought my total cholesterol from 250 down to 125; my BP went from 115/70 to 90/60. I stopped taking the statin immediately upon finding out I had reached my goal of lowering my total cholesterol. In what I had thought was a measure to improve my health, I quickly found out differently when the muscle pain set in. First it was in my back and neck. Once that quit hurting, it was like toxins went from body part to body part. After 10 months, for whatever reason, the pain has settled for months on end now in my right upper arm. The pain is intense and it literally feels like the muscles are being eaten away. I am on CoQ10 and other oils, Fish Oil and curcumin (for inflammation). My C-PR (blood work) is off the chart saying my body has inflammation. I am at a loss of what to do. My family doctor swears it is my thryoid and has me on Synthroid to ease the muscle pain, but I’m not convinced… I know it’s the statins……

  12. SHK
    Arkansas
    Reply

    My husband went from a strong man of 65 (who chopped his own wood)
    and could lift extremely heaving objects. Within a period of 6 weeks he couldn’t lift his arms, couldn’t sleep for the pain in his shoulders. Dr. took him off his Statin drug and the last two months he has lost muscle tone, can’t get out of his recliner by himself. He now has pain in almost every joint.
    I put him on coQ10 last week and we are watching and waiting. He is miserable. He had been on his Statin for over 20 years so we fear this is permanent. He is getting blood drawn often to watch his levels of Creatine
    and inflammation. Sleep is impossible which makes the fatigue even harder to deal with.

  13. Ayde
    Atlanta
    Reply

    I was diagnosed with ovarian cancer in august 2016, I also have sjogrens syndrome, I only take plaquanil 200 mg and 2 months ago I developed muscle weakness. …I’m only 39 years old. …I don’t know how I developed this…I had a muscle biopsy and still waiting for the results. …I’m currently taking prednisone 80mg…a day…

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