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. Rebecca
    Dearborn Mi 48124
    Reply

    Was on simvastatin for 10-15 years. Would occasionally get severe “charlie horse” like cramps around my rib cage and calf cramps. After noticing a increase in the cramps and severity I mentioned it to my Dr who then did a CPK level that came back normal.

    A few months later I began getting the severe cramps constantly. So severe they would take me down and if I tried stretching to relieve it I only cause more in other areas. I had a complete thyroidectomy over 10 years ago so they always said it was a side affect of calcium and vit D deficiency.

    After repeated testing and normal levels related to all thyroid issues my CPK finally was elevated. They took me off statins immediately. Now 6 weeks later my CPK is normal but my cramps are not. Sometimes I’m afraid to move knowing I will trigger one, sometimes they just come as they please. They are interfering with my everyday life! My body always feels exhausted, my muscles are always sore and always spasming. The neurologist didn’t see any reason at this time to do further testing and my Dr now wants me to see a rheumatologist. Has anyone experienced such severe cramping? Muscle relaxers help a bit but not always. Has anyone had normal CPK levels while still having spasms? I’m so lost… I feel like everyone thinks I’m crazy! But this is horrible and I need some suggestions please!

  2. dolores dibiase
    sun city, AZ
    Reply

    I have been taking Simvastin for several years, have muscle cramps in my legs and feet, but the worst is, my left leg, cannot lift it without using my hands to put on pants,etc. almost felt like I had a stroke. seriously thinking of stopping them.

  3. Robbie
    Phoenix
    Reply

    I was prescribed Lipitor 20mg with normal cholesterol and increased to 40mg unbeknownst to me because one artery is 50% blocked. The new dosage put me in bed for 11 weeks until my BSN wife told me to quit taking in Oct. Have not been able to walk or make a fist with either hand since. Been in hospital all kinds of specialists lost my job fun fun fun can’t even describe the pain I’m in daily and the doctors prescribe prednisone only which seems to do nothing. Very burned out with the whole experience now pain is in neck and base of skull getting more concerned. If any ideas please comment back.

  4. sandra
    Florida
    Reply

    I have taken many cholesterol meds. All gave me terrible foot and leg cramps. The last one, Crestor, I took for 3 yrs before cramps began. I am now on Livalo. I am experiencing no cramps yet. My cholesterol used to be in the high 300’s. It is now just above 200. I know mine is family-oriented. All my father’s and mother’s family died of heart-related problems or strokes.

  5. James
    PA
    Reply

    Update:

    Feeling much better after stopping lipitor. One lingering side effect symptom is a section of my mid back that remains numb and inflamed.

    What i have read on this is a little scary, so i wont speculate. I just want it to go back to normal.

  6. James
    PA
    Reply

    I have very high triglycerides and was instructed by doctor to take lipitor (generic). I was excited and determined to lower my triglycerides, but after 27 days my reaction to the statin was unbearable.

    I could feel my thigh muscles shrinking. I could not tell if it was just fat going away but it seemed like the muscles were leaning out. I could feel and see each muscle distinctly rather than as a unified mass.

    My forearms got noticably thinner as well. I have been using small dumbells to work on my forearm strength and those muscles have gone from firm to almost spongelike.

    I have stopped for 2 days and my lower back muscles are inflamed. They are visibly swollen and i can feel them brushing on my shirt when i squat or lean forward.

    I am 46 years old felt fine before this blood test, diagnosis and prescription. I was strong and getting in the best shape i have been in a long time in preparation for motocross season, but not my grip is weak my brain was clouded and i am not sure it’s safe for me to ride until i gain back the 10 lbs of muscle i lost in 27 days.

    I am only hoping it will be back to normal after the 77 hour period these drugs stay in ones system expires. I dont even want to think about what I may have done to myself.

    I have made an appt with a hepatologist to look more closely at my liver and find the cause of my high triglycerides. From what i have gleaned the statins can make your liver worse.

    I have many other symptoms, toes hurt, wrist, fingers all sore. Itching and one episode of ringing in my ears. Been moody, hyper at one social interaction and droll the next. I was taking coQ10 which i really like for the energy, but i am fearful it was masking the symptoms.

    Anyway wish me luck. I must conclude too when medicine is for profit, they are not looking out for the people. They want those big pharma gift vacations and kickbacks more than anything.

    Its a shame.

  7. Dorothy S
    Ontario Canada
    Reply

    I am 76, physically active, female and in decent shape. In later 2014 my Doctor advised that I take Lipitor to help with my Cholesteral level which was a little less than perfect. After three weeks of using Lipitor my legs were aching to the point it was an effort to climb stairs, get up from a chair and walking was no longer enjoyable. I was immediately taken off Lipitor and a couple of months later, my Doctor of 30 years became ill and died a few months later. In looking for a new Doctor, all agreed the Lipitor should be out of my system with no signs of damage. They were wrong.
    Now I have difficulty sleeping any time, my memory is less than perfect, walking is not a joy any longer, and my upper legs ache like a sore tooth, the pain never goes away. I do take an aspirin, works for me. I am also going to a Chiropractor and we are working on my leg muscles now. Some of the pain has lessened. I can feel some difference. I’m also exercising every evening before I go to bed. Now I take life as it comes and pray the next day will be even better….Dorothy

  8. SL
    Texas
    Reply

    Can statins use cause localized muscle pain? (Just in one place, not all over?)

  9. Mike
    Midwest
    Reply

    One month on a statin and I couldn’t tolerate the drug. Tried a different statin for a month. 3 years later, I still have muscle aches and pains I can hardly walk.

    • Norma
      IN
      Reply

      I have the same story as this person! On Simvastatin for awhile but I stopped because of muscle pain, Dr. Put me on prevastatin and the pain continued. I stopped the med. It’s been a year and I still can’t walk very far. I used to walk every day 2 or 3 miles, now I cannot! Stairs are a real problem!

  10. Dan Frank
    Cottonwood
    Reply

    After over eight years taking statins (mostly atorvastatin), I developed severe pain in both upper thighs. I experienced this pain when seating, rising from seating, and walking any distance. My orthopedist tried two sessions of cortisone shots in the spine with no change I then went to a neurosurgeon who, after mri and xrays, diagnosed my problem a stenosis of the spine. I went in for a eight hour spinal surgery that included pushing my 5th vertebrae back, securing with 6 screws, followed by fusing two vertebrae and sending me home. Not only did this not stop the pain, but I was left with a “drop foot” on my left foot. This was followed up with a two surgery a month later to try to determine the cause of the pain. No success.

    After eight years of this pain, I went on the internet to determine is others has similar experiences with muscle pain. Indeed, many others has the same pain and we all had one thing in common: statins. After discussing this with my doctor, he suggested I stop taking the statin for a month and if it helped, resume my atorvastatin, but instead of daily, take it every other day. I had previously stopped the statin for a week or two with no change in leg pain, but I went ahead with the plan. No change for 3 weeks, but 3 days short of a month the pain suddenly stopped. I then started to take the statin again, but the very next day the pain started to resume. I stopped immediately and have not resumed taking the statin and my leg pain has stopped. I still have weakness in my legs and back, but being pain free is a welcome result.

    Anyone experiencing muscle pain while taking statins should try stopping them for at least a month after discussing with their doctor.

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