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. Betty

    Took Zocor for short period of time….then Lipitor for 2 1 /2 years… was raised from 10 mg to 20 mg and things began to go wrong. Legs were constantly painful..Dr. removed me from the drug but things have steadily gotten worse…..legs are barely usable, difficulty getting up from a chair, constant pain at night….pain killers seem to do no good. Now, I have pain in the muscles in the back of my neck and lower skull.

    Have had muscle in stomach repaired and heart valve replaced. None of which I had a problem with before. Still have Afib. I’ve been going from bad to worse for the last 15 years, all with no relief. Three doctors have said “probably” Lipitor, other 15 look at me like I have a vivid imagination. One Dr. said if I found a cure let him know since his brother-in-law had the same problem….another said she had several patients with the same condition.

    Deaths are being reported daily….all listing heart muscle damage in people with no previous heart problems. This is usually the final muscle to give way, being the largest in our bodies. Great things to look forward to in near future. Filed report with FDA….by now, it has probably crumbled into dust.

  2. Denise

    My father died from Motor Neurone Disease after taking part in a drugs trial and taking Simvastatin for a number of years. Prior to this my father was a fit and healthy man, never smoked, drank to excess, carried no excess weight and played golf all his life at least once a week, He never had an illness in his life until he took a heart attack and started taking these damn drugs. I have always been convinced that the Statins caused his ALS . The medical world is in denial as are the big drugs companies who don’t want people to stop taking them and lining their pockets. My fathers death certificate should read cause of death STATINS.

  3. Coogan

    How maddening to read about the cumulative experiences of folks here, but I have also found solace. I was on Crestor and later simvastatin about ten years ago. Developed muscle pain in my back (like having been struck with a sack of potatoes–not every muscle but multiple spots in my back) and also a lot of chest “fluttering,” which I thought was heart related and resulted in a trip to the ER and lots of cardiac workups with no negative results. But as my pain continued, I got the same comments from physicians. Couldn’t be the statins (which I had stopped), as they would have cleared my system by the time I was reporting the symptoms.

    Since stopping the statins years ago, I was diagnosed with diabetes. Most recently, after experiencing numbness in my legs, I have been diagnosed with peripheral neuropathy. Are these conditions a result of the statin use? My diabetes has been well controlled. Yet, could the neuropathy be caused by the diabetes? Of course, there are no easy answers, but it is more than interesting that these changes occurred, given my previous statin use.

    But, as I mention the statin issue to different physicians from my PCP to specialists, I get the sense from them that they don’t share my opinions with respect to any connection of my symptoms to a long discontinued medication. I am sane. I am reasonably educated. I can be articulate at times, even witty. But I may as well be saying to these physicians, my friends, colleagues, etc., “I know that I am having these health issues because of my past experience with alien abductions.”

    So, I found this site today as I was pondering what to do next, after a night of cramping and weakness and fluttering muscles. I’m supposed to have another neurology consult regarding my neuropathy. But I am concerned about seeing yet another medical professional who isn’t attuned to the literature on statin side effects. It is a waste of money and resources. But I’m not sure of my next step. I was searching for a list of experts in different areas who might accept referrals, but so far the search has not been fruitful. I believe that Johns Hopkins and another hospital in the NE had research centers for statin myopathy, but I have to consider costs, etc., even if I do find a site that might be helpful. I’ll be pondering for a bit longer, I’m sure.

    Thanks for listening. And for further sharing your experiences.

  4. Merl
    United states

    I have been taking statin drug cholesterol lowering medications for years, off and on. I would start having leg cramps and weakness, then stop that one, then the Doc. would put me on a different one. I had a severely clogged artery behind my heart, they put in a stent, put me back on cholesterol. I stayed on this one for 4 years. Then boom, I tried to stand one morning from bed and collapsed. MY LEGS WERE NOT THERE! For 6 months or so. I researched every thing. I stopped the statin drug and My Cardiologist has me on a short term new injection cholesterol drug named, REPATHA sure click. I will find out from this one next month on the follow up to see if it works for me. He did say, ” There is no side effects to this. I ran one of the trails here and there are absolutely no side effects at all, none.” BUT there are; I have sinus pain, thick, sometimes chocking mucus from the back of my nose, into my throat. I haven’t done any in depth research into the REPATHA yet. The damage done to my legs from statin drugs will most likely stay or progress. I am 73 years and “thought” I would be able to be active, but the leg damage has been done. I would love to see a LARGE LAWSUIT AGAINST THESE PHARMA, NOW, while I might can know that the people effected by them and the destruction of health and lives will be STOPPED!

  5. Barbara
    Granite city,Il,62040

    I was put on 40 mg of zocor in 2004 in no time I was not able to get out of recliner, Dr. never told me to take coq10, or anything. Ended up being on it close to 2 yrs. Destroyed livelihood, destroyed my life I am now 67 in 2016 can barely get out of chair, no steps, pain big time!! merck pharm. just gave me a case number, but still cannot find a doctor to help me. husband died shortly before I started zocor our daughter was 14, when I started getting sick she was terrified. I guess I will be going to the ER the next few days, maybe they will put me the hospital and find out what I can do before I die..

  6. Rich

    After many years of refusing to take any cholesterol medications suggested by my doctor, I finally succumbed and started atorvastatin. In less than 2 months, I was noticeably weaker and was having joint and muscle pains. It was difficult to climb stairs because of hip pains and shortness of breath. I consulted a pharmacist about my reactions and he suggested that I stop the medication immediately and contact the doctor.

    I waited another week, but things were getting worse, so I called the doctor, told him I was stopping the drug immediately and they said they would get back to me with another medication soon. Within 30 minutes, they called back with another statin and I said that I would never take a statin drug again. So, after another hour, I got a call with a different type of medication being recommended and I agreed to start it a month later because I wanted to be sure that the effects of the statin would be out of my system before starting something new.

    I looked up the new drug and found that the side effects for it were just as bad as for the statins. I am now faced with a decision to try the new drug or just forget the whole mess and stay off of cholesterol drugs all together. I used to be able to walk 18 holes of golf without any problems. Yesterday, I could barely make it off the course after 9 holes of walking. I am really sorry I let the doctor talk me into something that could hurt me this badly. I hope that things will improve over time, but from what I am reading here, I’m not so sure that will happen.

  7. Sonny

    On 3/3/2016I was admitted to ER because my CK level was at 28000. I spent one month in the hospital and confined to wheel chair force more than 3 weeks while I was in a Rahab Hospital. It happened after i stopped taking 20 mg Lipitor. I had experienced pain in my abdomen and elbow was the reason to stop taking Lipitor. My life will be the same like before? I don’t know. I am still in rehab, medicated and IVigs ….
    I reported my case to FDA and Pifzer, the drug maker. I am ?

  8. Andrew
    Rugby, England

    I was put onto Pravastatin after an MCI in 2001 when my Cholesterol was over 8 (Familial Hyperlipidaemia is suspected) In 2013 my GP switched me to Simvastatin as my lipid had crept up to over 5.
    I’ve suffered also from Osteo-Arthritis in my extremities for over 25 years, and my knees became painful around 2012.
    I’ve now had one knee replaced and was doing well for two months post-op. Suddenly I was aware of an overwhelming feeling of weakness in my legs, accompanied by aching in all the muscles of locomotion. I reported my suspicions to one of the GPs at the surgery and she seemed to agree with me and told me to stop taking Statin. That was in mid-May.
    I can report that there has been no relief from my symptoms, and a blood test at the end of June showed no appreciable rise in LDL.
    Looking back, I can see now that a progressive reduction in energy levels was also present over the last 3 years.
    The warning contained in the Patient Information Leaflet deprives victims of Statin side effects of any legal remedy against either the Pharmaceutical companies or the GPs who peddle – er, I mean, – prescribe these noxious drugs

  9. Lee
    West Midlands

    I have taken lipintil for over 4 years and have gradually got worse with my muscles and legs,I have left work from being healthy footballer and postman to virtually doing nothing,lying around and crying with my muscle pain, to relieve the pain i am now on Tramadol and Gabapentin,after much consideration for my health I have decided to stop my statin medication on 29 th June 2016/I will keep a blog of my fortunes on here on how my muscles are getting on!kind regards Lee Painter.

  10. Chrissy

    My doctor put me on Lipitor after test showed high cholesterol. I took half a pill each day for 3 days. The mild upper thigh pain increased to unbearable on third day and worsened as darkness fell. I had a thought it was rhabdo and knew it was muscle tissue dying and kidneys would fail from trying to filter heavy muscle protein.

    I forced fluids and walked the floor all night until doctors office opened. I was urinating every 10 minutes from forcing fluids to try to save my kidneys. Doctor said I should have gone to ER, but I hate hospitals so I drank water and walked. Test showed lipitor was almost gone when I got to doctors office.

    He gave me gabapentin and some other med, but told me I can never take statins again. Pain was so agonizing in my legs that I was trembling and constantly pounding my upper legs to try to get rid of pain.

  11. T

    I was told if the pain was to be from crestor it would be in both thighs not one. True?

    • John
      Biloxi ms

      I wasn’t told anything about pain at all.

    • Chrissy

      Yes, for me, the pain was extreme in both upper thighs, equal pain. I do not think I suffered permanent damage from lipitor induced rhabdomyolosis and I am thankful.

      • Sonny

        I experience the same. Worse before when I was near d…

  12. John H.

    10 years ago the Internist suggested taking a Statin as a preventative measure. Then I began a series of problems that no one in the Medical community seemed to recognize or talk about. Sleep disorder – insomnia, foot burning and stinging pain, severe calf and thigh muscle pain and loss of strength. significant pain in the mid back and especially on the left side. Stiff neck and numerous headaches. Peripheral Myopathy in both hands also lost the ability to type. Became a clumsy person since I could not feel anything my hands were touching. Had difficulty staying interested or following thru on most tasks. Significant Vertigo and and found that my memory was clouded and had difficulty with names and events. Thought that the end was in sight. In my previous life I was always on top of the world and this was very unsettling at the least. finally discovered that most of the problems were associated with long term Statin usage and weaned myself of the drug and told the Doctor why. Only been a month and some things are returning somewhat, but after reading the horror stories may have to live with this for the long term. This regimen of using Statins without documenting a real need is not worth becoming a trial lab rat. The first doctor retired and the second is a little bit stuck in the generic program that everything works for everybody. Not the case for a lot of Meds and this is a horrible example. Even the Pharmacist indicated that some people have problems. Certainly wish I had this knowledge up front and would have opted out of the experiment.

    • John H.

      This is an addition to my previous comments. Two weeks ago I fell in my garage and broke the top of the Femur bone in the hip. Required surgery and I am really restricted to movement and am enduring significant pain. The primary reason for the fall was the loss of strength and feeling in my hands and legs and was unable to stop the tragic fall. Another result of the loss of strength and feeling in my hands and legs. Long road ahead to hopefully return to something normal. Statin Drugs are dangerous for some people and I am a classic example. John H Iowa…

  13. Christopher

    First off, let me say to all of the Statin-damaged people, I am sorry. I am sorry for your medical problems caused by a drug which was sold to you based on checkbook science from the 1950s when prof Ancel Keys set out to do a 22-country study to prove that Cholesterol causes heart disease. But when his data could not prove anything, he carefully omitted the countries which were causing his pretty graph to not look so pretty, and hence the cholesterol theory was born.

    I was disabled since 2002, after taking the statin Lipitor for 3 years. I was a healthy 34 year old Critical Care RN who had a zest for life, was energetic, and LOVED being an RN. I tolerated the Lipitor “well” for about 3.5 years when all of a sudden, life as I knew it no longer existed. I was becoming ill in July 2002, with episodes of unbelievable headaches, the likes of which I’d never known. They would cause me to miss several days of work over the next 3 months. Accompanying the headaches was profound fatigue, which would cause me to sleep up to 17 hours per day.

    My wife was becoming concerned. She had taken me to the doctor on one occasion and to the ER on 2 other occasions, as it was on a weekend. My wife took me there because of the disabling headaches, unbelievable fatigue, and periodic bouts of confusion. She asked the doctor, pleaded with the doctor, to do an MRI scan, to which she was told that an MRI was not indicated. And I was discharged home with Imitrex (Injectable Migraine Medicine).

    When we got home, my wife discussed this with my sister-in-law, also an RN, who told my wife that she should call my primary doctor at home and ask about an MRI. When she did this, he agreed an MRI should be done and ordered it for the next day. After the MRI, my doctor called my home and told my wife that the MRI showed multiple scattered lesions throughout the white and grey matter of my brain and referred us to a neurologist who opined that I had MS.

    We decided to seek a second opinion and went to an MS Specialist at University of Wisconsin, Madison. When we arrived, the doctor said that he did not believe what I had was MS, though he could not say for certain what it was. He sent us home with a follow-up with more testing to be done in a few weeks. Over this time period, my condition was worsening. Missing many more days of work, increased confusion episodes, increased fatigue, and now my wife woke in the middle of the night to find me digging through the kitchen trash, “looking for a glass of milk” and a week later woke to find me walking down the middle of the street in my underwear (what I slept in).

    At this episode she phoned UW and spoke to the MS doctor, who suggested that my wife bring me down (3 hour trip), and he would evaluate me in the ER. So we dropped our 2 year-old son off at my parents, for what we thought might be a few days and went to Madison. When we arrived I was seen immediately by the neurologist who gave me a mini mental exam, which I failed miserably. He continued to assess me and admitted me, where I remained in an End-Stage Alzheimer’s like state for the next 3 weeks: confused, disoriented, unable to walk or speak coherently, nor verbalize the need to use the restroom, and therefore wore diapers. I did not know who my wife was, nor my siblings, nor parents. My speech was garbled. I had multiple lab tests done, consistently showing elevated Lactic Acid Levels. I had lumbar punctures which were not consistent with MS. I had a muscle biopsy revealing mitochondrial abnormalities, and finally a brain biopsy which confirmed the Mitochondrial DNA mutation most closely similar to Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke Like Episodes (MELAS) for which there is no cure.

    Biopsy also revealed the lesions on my MRI to be Apoptosis (Programmed brain cell death), a normal process in which the body recognizes weak or damaged cells, and automatically allows the cell to die, and replace it with a new one. Only in my case, only the first half of this apoptosis process was being done. (No wonder the headaches). The powers that be were preparing my wife for a transfer to a nursing home where I would live out my days.

    Then I was evaluated by a visiting professor from Johns Hopkins, who suggested I start a Mitochondrial Cocktail (essentially a dozen vitamins, amino acids and 1 Key Component COQ10) My wife informs me that it was within 36 hours of starting this cocktail that I became aware of my surroundings. I recognized my wife, parents, siblings, and my 2 year old son. Was up walking with Physical Therapy. I no longer wet and soiled myself and was no longer needing diapers. And the plans for a nursing home changed to discharge home with aggressive rehab.

    Ever since Nov 6, 2002, I live with chronic muscle pain, relentless fatigue, which has improved modestly with increased Ubiquinol dose strength. Per Doctor Beatrice Golomb MD, PhD of the UCSD Statin Effects Study I enrolled in after discharge, my use of Lipitor “was the causal contributor to the Mitochondrial Mutations” seen under electron microscopy of my brain biopsy, as well as the holes (apoptosis) seen in my biopsy.

    It was after this that I decided I need to pour every ounce of time and energy into researching statin drugs which I discovered were founded on flawed data manipulated by Prof Ancel Keys, when his 22-country study failed to prove the cholesterol causation of heart disease, so he cherry-picked 7 countries which were skewing his data, and “Ta Da!”, the cholesterol=heart disease theory was born. Drug companies ran wild with this “data” and have since boasted unbelievable record-breaking profits from the statin boom.

    In spite of taking statins, the absolute risk reduction of heart disease lies somewhere in the range of 1%…yes, a paltry 1%. Hardly what you would expect from a record-breaking drug. But that’s because the statisticians are too smart to use (the accurate) Absolute Risk Reduction (ARR), and use a Relative Risk Reduction (RRR), which is a way to make 1% look like a glorious 40+%. 40% will sell drugs, to the tune of $ hundreds of billions/ year, and that makes stockholders happy. And when they send their army of drug sales reps into doctors’ offices and clinics and hospital emergency rooms, the drug reps know full well to NEVER use the ARRs, because that will not sell drugs. They tout RRR’s, and minimize adverse events. This is why so many physicians, (you know, the people we entrust with our lives) have no idea what statin drugs, or what artificially altering one’s cholesterol levels, will do.

    Despite learning the utter importance of Cholesterol in Pre-Med training, when they learned the Mevalonate Pathway which Cholesterol and dozens of other essential molecules are made, such as Vit D, CoQ10, Dolichols, Steroid Hormones, Testosterone, Estrogen, etc etc …how they can forget this is beyond me. It is the source of our ability to produce energy to our cells, and blocking the production of these substances will have disastrous consequences.

    Don’t take my word for it. Read “The Truth About Statins: Risks and Alternatives to Cholesterol Lowering Drugs” by Dr Barbara Roberts, MD, a cardiologist of 40+ years who knows all too well that Statins will benefit fewer than 1% of all who take it, leaving the other 99% at risk for devastating adverse effects. Or look to Dr Duane Graveline, MD, who was a NASA Flight Surgeon and a Family Physician, who suffered from Transient Global Amnesia as a Result of his statin use. Or read anything by London Cardiologist, Dr Aseem Malhotra, who knows the statistical contortionism which has led to probably the biggest scam in the history of the world.

    I am an administrator in a Statin Effects Facebook group, of which there are 3 Cardiologists including Doctors Roberts and Malhotra, a few well published biochemists, and other experts, but mostly almost 1800 victims of statins from all over the globe, if anyone is interested.

  14. JMC

    Statin was the results of a biopsy my dermatologist did years ago.Skin was scaling off my feet layers at a time.After seeing two doctors and three specialist finally my dermatologist said we weren’t going to treat this horrifying condition until we find out what we are treating.Who would have thought stain was the reasoning behind my skin condition.Kerotoderma with psoriasis is the diagnosis. Skin has continued to peel off daily for five years and my toes nails have also h decayed and have come off..Like so many I have muscle pain and cramping.I am now diabetic and have preripheral neuropathy in my arms and legs.I was very active walking , swimming, kayaking, hiking,fishing and enjoying activities with family.After I stoped taking Lipitor, Crestor, zocor, and so many others I am walking with great discomfort, struggle getting up and down, very fatigued, have special orthotics and have to address and medicate my feet three times daily.Doctors say there is no cure for my feet and with some uncertainty about reversing all the drastic side effects of statin drugs. I am being advised to see a vascular surgeon and a foot surgeon.Seems like this could be an ongoing journey of experimenting with natural means of stabilizIng what statin has invaded.You need to take charge of your on health, ask lot’s of questions ,do your on research and keep up with what’s new stabilizIng your condition.Always being hopeful, prayers are with you….

  15. Carrie
    North Carolina

    I took Zocor for 6 months, then Lipitor for 1.5 yrs, then Pravachol for 1.5 yrs, then finally Crestor for 3 months,, all to lower my chlorestorol, before finally refusing to take another statin. I was unaware of the muscle damage these drugs could do. Each time I told my Endocrinologist that I was experiencing muscle pain and discomfort, he would then either lower the dose or the frequency. Never mentioning to me that these medications can cause serious, irreversible muscle damage. Not a word!! Long story short, I now suffer from Polymyositis, a extremely painful and debilitating Auto Immune Disorder. No remission! I suffer daily pain, weakness, even while daily taking one of the strongest pain narcotics available. DO NOT TAKE THESE DRUGS!!

    • Carol

      Thank you for your info – I have been on statins for 15 yrs and now have one leg that is so weak I can’t put any weight on it as it tries to collapse – the foot drops and is partially
      paralyzed to be able to move upward – I have an appointment tomorrow with a neurologist and wonder why I am going after reading all the info in this site…I am off
      atorvastatin as of today and hope to walk again without a walker…this is just 3 months ago. My Dr. has no clue what my problem is after xrays of back MRI of back bone density and heart tests – I think you are more knowledgeable than she is…I have a lot of
      pain in my neck and some lower back pain – I just want to be able to dance and get up on the stage and sing again. Blessings to you all with this horrible result of taking a drug that should have been banned long ago….

  16. Harry

    The large number of letters pointing out the aches & pains coincident with taking statins is scarey and one-sided. I’m 77 and have been taking Lipitor (~10 yrs) and simvastatin (8 yrs) and have not experienced the leg/thigh/general muscle side effects pointed out. I’m losing muscle tone and strength due to age. I walk a mile a day and am in generally good condition. Sounds like an independent study is in order and the health community should address this — not dismiss it. What are the odds of side affects? Harry

  17. Sylvia

    I stopped taking statins many years ago , I must have been one of the first people to use them, I took them for about 10 years, suffering from what the Doctors said was Osteoarthritis, my muscles constantly hurting, in 2002 after reading on the internet other people had the same problems I had I stopped taking them, I was finding walking was very painful, my muscles in my legs were atrophying , and even to get out of bed was a problem, as even the small muscles in my ribs hurt when getting out of bed ,I still have the pains after years off of this drug.
    I told others who had the problems I had, and they also stopped taking them and are back playing bowls and driving their cars, one person I told (he was walking with two walking sticks, and couldn’t drive)said he told his Doctor, who said he must not stop, but after listening to him went and looked something up, and said that he may indeed be right!He stopped right away.
    I feel that if I had continued taking this drug I would have died, I still have pain, but at least I can walk, albeit with pain,I am 80 years old, and have continued taking an interest in the effects of this drug, because I have had many problems that other users seem to experience, I have had both eyes operated for cataracts, walk with difficulty,have awful joint pain, I heard on the Radio a heart specialist say only people with a diagnosed heart problem should take statins, otherwise they are of no use.
    My mother and her sisters all lived to a good age, and had never heard of statins, I think I would rather take my chances , the side effects from this drug is too horrendous to take a chance. Do your own research,

  18. Susan

    I had a heart attack at the age of 53. Even though my cholesterol levels were not high, I exercised regularly and ate healthy, they put me on simvastatin. I was told that this was because my levels needed to be even lower than what the normal level is.

    After about a year I had developed mild leg pain. I could still walk, run but my legs were very achy. It progressively got worse. I spoke to my cardiologist and my regular doctor and I was told (in my opinion) that it was all in my head and that I had no choice but to stay on the medication since it would help prevent a 2nd heart attack.

    As it worsened I complained more, they took me off the simvastatin and put me on lipitor. Another statin. Pain was getting worse. At this point when I lay in bed it felt like my legs were being beaten by ball bats. It was excruciating. I would cry every day. If I sat for more than 5 minutes I would stiffen up so badly that I could barely stand and walk. Going up stairs got to the point where I would have to physically use my hands to lift my legs.

    They took me off the statin for 2 weeks. They put me on a different one and within a week the leg pain was back and getting worse. They finally took me off completely a year ago. The leg pain is so much better. Still achy at times and it still can be tough while walking or exercising but at least I can do it again. My frustration lies with the doctors brushing off the pain and saying it’s in your head. It wasn’t in my head. There were times I was in such excruciating pain I would have welcomed death. My point is if your feeling that kind of pain keep pushing your doctors for other alternatives.

  19. Butch

    In 2009, the VA doctor,put me on Simvastatin. It only took 21 days to put me in the hospital. I was told to never take a statin, again. It’s now 2016, and I still have the worst cramps in my legs, you can imagine.

    I was told by a neurologist, I had a disease call isaacs syndrome. I looked it up and found out there was 200,000 documented cases (in mostly Scotland. and that it was hereditary). Funny thing is, I’m native American and English. The fact of the matter is, Dr.’s either do not know, or will admit nothing.

    I will not take any meds, when the side effects, are worse than the problem.

    I was told by my Dr. when I quit the statin, the problem would leave to. So much for that brilliant observation. The other fact is, no matter how much information I showed them, all the Dr.’s denied that the statin caused the problem.

    So, for anyone who is directed to take a statin, I would do my homework on the drug, first. In 09, I was 60 and running 5 miles a day. Now I’m 67, and can’t walk 5 blocks. If I had been given the choice, or had the side effects explained, I would have declined the meds, and taken my chance without them.

    You All have my deepest sympathy. But, don’t give up, maybe, 1 day, a person might find the cure. What really is scary, is that everyone seems to be given all kinds of diagnoses.

  20. Ken

    I feel for all that are having these problems. I was initially put on Zocor, 40mg then switched to Simvistatin, 80mg. My problems are primarily with left leg. It will cramp, spasm or collapse. Thighs feel like I ran a marathon. I had a biopsy done on calf and have atrophy. Have developed dropped foot.

    In one reply it was mentioned about having to pick up leg to get dressed, stairs are a challenge. Lead with right, drag left.

    Side note: I have been experiencing bouts of dizziness. My BP spiked and I was admitted.

    After reading some of symptoms online one of the neuropathies can cause elevated BP leading to dizziness or lightheaded. Getting this checked out.

    If it is caused by this, how do you control it? I took it for a couple of years, argued with doc about causes, discontinued the drug- problems are permanent, not lessoning and may be getting worse with time. I could go on but you get the idea. Luck to all.

  21. Rebecca
    Dearborn Mi 48124

    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!

  22. dolores dibiase
    sun city, AZ

    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.

    • Gail

      I have the same problems after taking different statin types of cholesterol pills. Even though I stopped taking (without the doctor’s approval because I got all kinds of problems with my liver damage, close to diabetes, ringworm, etc), I can’t stretch my body. I got a severe muscle cramps and my lower leg swollen up. I had to take anti inflammatory drugs and ointment for months, but they didn’t seem effective. Now, it has become a permanent issue for me.

      • Andrew

        I’m interested to note your reference to Ringworm. This is a fungal infection related to Athlete’s Foot, which I had in my youth.
        Tinea Cruris came back to haunt me in my senior years and still persists despite all manner of medication. It hadn’t occurred to me to associate it with Statins.

  23. Robbie

    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.

  24. sandra

    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.

  25. James


    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.

  26. James

    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.

  27. Dorothy S
    Ontario Canada

    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

  28. SL

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

  29. Mike

    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

      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!

  30. Dan Frank

    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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