statins help or harm

For years we have been receiving tragic stories from readers of our syndicated newspaper column and visitors to our website. They reported a debilitating myositis muscle condition after taking statins. Some were diagnosed with polymyositis. Others developed inclusion body myositis, dermatomyositis or necrotizing myositis. Such autoimmune conditions lead to severe inflammation of muscles. Weakness, fatigue and muscle degeneration result. Many people want to know if statins cause myositis. We can now answer yes as a result of a new Australian study published in JAMA Internal Medicine (online, July 30, 2018).

What Is Myositis?

Whenever you see ITIS, think inflammation. ArthrITIS is inflammation of the joints. GastrITIS is inflammation of the stomach. MyosITIS is inflammation of the muscles. There is no cure for myositis.

The Australian researchers describe the autoimmune muscular disorders this way:

“They are severe, debilitating conditions that can result in permanent disability and death.”

They note that this necrotizing myositis related to statins:

“does not resolve with cessation of statin therapy and requires treatment with immunosuppressive agents.”

Symptoms of Myositis:

According to the Johns Hopkins Myositis Center, symptoms of myositis include:

  • Difficulty standing up from a chair
  • Problems going up stairs
  • Fatigue after standing or walking
  • Pain in muscles that persists
  • Blood test abnormalities for muscle enzymes such as CPK or aldolase
  • Difficulty breathing and/or swallowing

Doctors Reject Statin Side Effects:

Statin medications to lower cholesterol levels are a mainstay of treatment to prevent heart disease. It is estimated that over 200 million people around the world now take drugs like atorvastatin (Lipitor), lovastatin (Mevacor), fluvastatin (Lescol), pitavastatin (Livalo) pravastatin (Pravachol), rosuvastatin (Crestor) and simvastatin (Zocor).

Many researchers and some doctors have been skeptical that muscle problems could result from statin use, except in very rare cases. In large measure, most clinical trials have not reported much in the way of muscle pain.

A review in the European Journal of Preventive Cardiology (March, 2014) concluded that:

“Only a small minority of symptoms reported on statins are genuinely due to the statins: almost all would occur just as frequently on placebo.”

The authors go on to seemingly dismiss statins as a cause of muscle pain.

They reviewed over a dozen randomized controlled trials and noted:

“…Importantly, the many side effects commonly attributed to statins (e.g. myopathy, fatigue, muscle aches, rhabdomyolysis, or rise in creatinine kinase > 10 upper limit of normal) were no more common in the statin arm than the placebo arm.”

Myopathy, Myalgia and Myositis:

Words like myopathy, myalgia and myositis may seem similar. After all, they all start with “my” coming from the Greek mus meaning muscle. Myalgia is a symptom: muscle pain. Myopathy is a general description for a disease of muscle tissue. Myositis is more specific and it refers to the inflammation and autoimmune conditions we described above.

The Australian researchers introduced their study on statins and myositis by noting that:

“There are potential harms associated with statins, including well-known musculoskeletal adverse effects that include myalgia (estimated prevalence, 7%-29% of all statin users) and the rare, yet severe condition of rhabdomyolysis…”

In many cases the myalgia (muscle pain) disappears when the statin is discontinued, or the dose is lowered. When statins cause myositis, the symptoms may not go away after the drug is stopped.

Do Statins Cause Myositis?

The Australian researchers found that people with what they called idiopathic inflammatory myositis (IIM) were twice as likely to be taking statins as healthy people. The diagnosis was confirmed by histopathology.

The authors make these key points:

Findings: In this population-based case-control study of 221 patients with idiopathic inflammatory myositis and 662 age- and sex-matched controls, there was a statistically significant 79% increased likelihood of statin exposure in patients with idiopathic inflammatory myositis compared with controls.

Meaning: Given the increased use of statin medications worldwide and the severe adverse effects of idiopathic inflammatory myositis, increased awareness and recognition of this potentially rare adverse effect with statin exposure is needed.”

Stories from Readers:

We hope you were able to make some sense from the complicated and confusing story regarding the question: do statins cause myositis? It is hard to actually relate to something this technical. That is why we share a few stories from readers. It is only in this way that people can grasp the severity of myositis.

MK developed inclusion body myositis:

“I developed muscle weakness soon after starting Lipitor. When I complained to my doctor, he switched me to Vytorin [which contains simvastatin along with ezetimibe].

“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.”

LDG shared this:

“I had been taking statins for about ten years. About a year ago, I began losing weight. Finally, my doctor found that my enzyme level was elevated. I was diagnosed with Myositis from statins. My PROGNOSIS is that I will continue to deteriorate . THERE IS NO KNOWN CURE FOR STOPPING THE PROGRESSION. I now walk with a rollator and not any long distance.”

George shares what this condition did to the quality of his life:

“I am a 59-year-old general contractor who can no longer lift a hammer or even take the cap off a Sharpie marker. I attribute this to the statins I was on for a total of 2 1/2 years.

“Starting in December of ’07 my feet became swollen and red and the bottom of them hurt, especially with shoes on. Then I started having shooting pains down my legs and arms and into my hands. I was diagnosed with carpal tunnel syndrome in my right hand, but the pains were still occurring in both arms and legs.

“In August of 2008 I went to a neurologist who ordered all kinds of blood work. The only abnormal result was a muscle enzyme level of 6000 (normal is 250). He ordered an EMG and the neurologist who did the test made a preliminary diagnosis of Statin-Induced Myositis.

“After further discussion, the doctors now think I may have Polymyositis as well as the Statin-Induced Myositis. I have extreme weakness in all my limbs and hands, trouble swallowing and opening my mouth. My wife has to help me dress and go up stairs. I never had any muscle weakness in my life until I went on statins, so I am convinced they have caused all my problems.”

You can read a great deal more about a variety of neuromuscular complications associated with statins at this link. Many patients believe that statins cause myositis. You can read their stories:

Statins and ALS-Like Syndrome

Share your own story in the comment section below.

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  1. Deb
    Bourne End Buckinghamshire, UK
    Reply

    In 2011 my GP prescribed Simvastatin 40mg, as I had high cholesterol and a family history of heart disease. From the first tablet, I had muscle pain, and after 5 days I stopped taking it, as I couldn’t stand the pain. About 10 days later I was at work when I stooped down to get a book of the bottom shelf. I couldn’t get back up. I fell sideways but I didn’t have the strength to stand on my own.

    I went back to see my GP and told him what had happened. He told me it was the Statin and to stop taking them. I told him I had 10 days ago. He jumped up, and on his way to the door told me that there was a rare condition, not that he thought I had it, but he’d do a blood test just to make sure.

    The following day I received a call from my son to say my GP was looking for me, and could I call him urgently? I went to the surgery, and my GP told me my CK was over 8,500, and he prescribed prednisolone 30mg and a repeat blood test in 2 weeks. My CK came down to 6,500 but stuck there. I was referred privately to a rheumatologist, as I didn’t want to wait 6/8 weeks on NHS. When I saw the rheumatologist he said I probably had Polymyositis and referred me to a neurologist at the John Radcliffe Oxford.

    The neurologist ordered a muscle biopsy and an EMT. They proved that I had Statin-Induced Necrotising Myopathy. I was prescribed methotrexate along with prednisilone. For two years I plodded on with the pain getting worse. I was told about a specialist Dr at Kings College Hospital and asked my rheumatologist to refer me there. However, she refused, telling me I was an anomaly and nobody could do anything for me! I then went to my GP and told him I wanted a second opinion from a rheumatologist at KCH.

    My first appointment came 6 weeks later and lasted 2 hours. I’ve since had lots of tests and an MRI which shows without doubt that I have Statin-Induced Necrotising Myopathy. I have tried all the different medications: Cyclophosphamide and Ivig but nothing has stopped the progression or the pain. I’m waiting to hear if I can have Rituximab, as that is my last chance!

    Statins have ruined my life. I can no longer work. I cannot walk very far, and I’m exhausted all the time. I can’t cook, as I can’t stand, and my arms are so weak I can’t lift a pan, and I drop things. I’ve gained 3 stone from the prednisolone, and I no longer have an interest in going out. The worst is the pain that medication can’t stop. I take morphine-based tablets with Oramorph as a back up.

    My advice to anybody considering taking statins is DON’T. They will ruin your life!

  2. ADRIANA
    DALLAS TX
    Reply

    These symptoms are similar to those produced by flecainide given to a fibrillation patient. Has anybody heard this?

    I have been taken flecainide for 9 years and I have seen the deterioration of my leg muscles. Now the doctor wants me stop it. What will happen to me? Anybody know?

  3. Fay
    Warren, NJ
    Reply

    I agree statins can cause severe muscle problems . Back in 2001 my husband was put on a statin. He developed severe back pain and his intestine went into spasm and twisted. He went to the hospital and was admitted. The intestine corrected itself so he didn’t need surgery.

    However, while in the hospital he developed a blood clot in his leg that traveled to his lungs. He was at first told he had pneumonia when it actually was the blood clots. It was a bad experience that I attribute to the statin that started the problems.

    He stopped the statin and recovered, thankfully. Recently he had a stroke and again the doctor wants him to take a statin despite the fact his cholesterol is 156. We are refusing but he is still trying to push it on him.

  4. Terry
    30075
    Reply

    I think statins changed my entire body. I have been off of them for years and I have never recovered my strength. I was talked into taking red rice yeast for two weeks a few months ago and I could not even stand up, so quit it too. Some people just can’t take statins, and I am one of them.

  5. Kat
    Florida
    Reply

    I’ve been on statins since 2000 when I had a TIA at age 51. I was also on estrogen replacement therapy for menopause at that time and had had problems years earlier when taking birth control pills. I happened to be in a large metropolitan area at a business dinner when the TIA happened and was taken to a brand new state-of-the-art hospital that had all the newest equipment. So I was given a battery of tests over two days.

    They could find nothing definitive to have caused the TIA, and I had no blockages, but my GYN had me stop the ERT immediately, which leads me the believe that’s what caused the TIA. I have never had heart problems, and my blood pressure is still good now at age 69, but I’ve been on different statins for 18 years. I’ve had leg cramps in the past, but they have usually been controlled with 200 mg of CO-Q10 and 250 mg magnesium daily.

    Since my cardiologist switched me to Rotuvastatin (Crestor) in January of this year, my leg cramps have been much worse. I’ve increased my CO-Q10 to 300 mg daily, but still usually have a cramp sometime during the night. I only take one other prescribed med for low thyroid (which is very well controlled) but have found myself really slowing down lately and being physically tired a lot of the time, for which I can think of no reason … other than statins. Hmmm. Time to talk with my doctor.

  6. Chuck
    Reading, PA
    Reply

    My cardioloigist thinks I am crazy and doesn’t like it if I say anything negative about atorvastatin. I’ve been on again/off again with it and also reduced doses for several years. I really haven’t noticed anything major one way or the other. However, when I did get off it for a while, my severe nighttime leg cramping stopped. Getting off the atorvastatin no longer works to relieve the cramping as my small fiber peripheral neuropathy is getting worse. Which is another condition I have to deal with.

  7. david
    NV
    Reply

    Google “statin myopathy risk factors”

  8. JUNEBUG14
    Reply

    Lipitor made me bedridden after the first week of taking it. Crestor was the next try by my PCP and by the second bottle I couldn’t stand the pain anymore. Zocor gave me such severe neropathy in my legs that I fell. I swear that I will NOT take another statin for as long as I live, and I still suffer from their side effects. I too know that there is no cure so I will just manage the best I can.

  9. N
    Maine
    Reply

    Statins are DEADLY, and I’m going to keep saying it. My mom was on Crestor for years – progressed from excruciating muscle cramps to muscle weakness that finally landed her in a wheelchair. Then came dementia and finally diabetes. She was a healthy woman before Crestor, and the doctors refused listen and told her to keep taking it.

  10. mary i.
    bergen county,nj
    Reply

    I had been taken statins for over 20 yrs, all the while my muscles are getting weaker and weaker. I discovered I have Myasthenia Gravis. Was put on medication to no avail. Changed doctors and had a British Indian dr who immediately stopped the statins and said in England they are never given MG. He added Imuran with the mestonin. I am very much improved. Yet my U. S. Dr. does not believe it. I was put on Zetia for the chlosterol but still wonder about them.

  11. Nancy
    Northwest
    Reply

    What about leg muscle weakness when I sit down into a chair? I literally fall onto chairs and have to use my two walking sticks/canes. I do have trouble getting up from chairs but I build momentum to get up. It’s the falling into chairs that’s odd. Even a 97-yr-old friend doesn’t do that, and she uses a walker. I don’t recall seeing any other seniors falling into chairs. I swim, and until 4 years ago used to bike. My knees are bone-on-bone but that shouldn’t totally account for plunking myself into chairs.

  12. norah
    Brevard, NC
    Reply

    I have ITP as well as a clogged carotid, and my doctor increased my avorstatin from 20 mg to 40 mg. At the end of one month of increase, the chemo that I’m taking to increase my platelets stopped working and my platelets dropped into the low zone again after being stable for about 6 months of Promacta (an oral chemo). We dropped the statin back down to 20 mg, and in one week my platelets jumped back up to normal. I’m wondering whether the statin might have caused the platelets to drop? Have you ever heard of any impact of statins on blood?

  13. Shirley
    Palm Beach Gardens, Florida
    Reply

    Our friend had inclusion body myositis for years before dying of it and the most proximate cause of death, fecal impaction, brought on by debilitation it caused. Not sure if she was a statin user. She was an early adopter of silicone breast implants, which she had in her body for decades. We thought the latter may have contributed to developing myositis, but perhaps it was really a statin. She also smoked cigarettes from age 10 until a few years before her death. And drank alcohol daily. Staying away from these precipitators seems the best decision. And eating a mostly plant based diet and exercising, not smoking and drinking, that way we won’t need a statin as our blood pressure is likely to be fine.

  14. Pat W
    Florida
    Reply

    I think I am going to speak with my doctors about getting off my statin meds. These are some of the symptoms that I have. I was given a topic cream to use on feet and legs. I works, but I have to use it 4 or 5 times a day. The pain is starting in the other foot. Thanks everyone for your input.
    People Pharmacy you are the best with info. Good luck to all.

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