The People's Perspective on Medicine

Statins Can Cause Myositis: A Serious Statin Side Effect!

Statin side effects include muscle pain, type 2 diabetes and cataracts. The FDA has minimized an autoimmune muscle condition but statins can cause myositis.
Elderly grandfather in nursing home using a rollator in his pajama

Here’s a question for you. What is the difference between myopathy, myalgia and myositis? We’re not surprised that you don’t have an easy answer. We bet a lot of health professionals would have trouble describing the differences. Let’s start with “myo.” It comes from the Greek and means muscle. The word “pathy” comes from the Greek patheia which is translated as suffering. Myopathy is suffering of muscles. In other words, a general term for muscle disease. “Algia” translates as pain. So, myalgia is muscle pain. Myositis is nasty. “Itis” means inflammation. Just as arthritis means inflammation of joints, myositis means inflammation of muscles. Statins can cause myositis. Most people do not appreciate how serious this adverse reaction can be.

Statins and Myositis?

This reader relates a close call with statins:

Q. My wife had a bad reaction to statin drugs that started in her arms and shoulders. She could not get up the stairs or even off a chair unaided. This all happened in a space of around four weeks. Eventually I rushed her to the hospital. She could not raise her arm. Since she could not even swallow without choking, she almost died.

In some ways she was lucky. She was seen by a doctor who specializes in myositis. If he hadn’t been at the hospital that evening, she might not have survived.

It has taken around 18 months to get back to where she was before the statins. The doctor gave her steroids and methotrexate. She finished the steroids in March, but she’ll remain on the methotrexate until Christmas. She still has nightmares about this experience.

Statins Can Cause Myositis But Is It Rare?

A. Myositis (inflammation of the muscles) can be a devastating autoimmune condition that leads to disability and sometimes death. Symptoms may include difficulty getting up from a chair or walking up stairs. Treatment often involves immunosuppressive drugs.

There are different forms of myositis:

Polymyositis:

Poly means many, so many muscles are inflamed. It’s not that easy to diagnose. Symptoms often start in the arms and shoulders. It can be hard to lift things or comb hair. Standing up from a chair or toilet seat can be challenging. People often complain about climbing stairs. Eventually it can be difficult to walk.

Doctors do not know what causes the body’s immune system to start attacking and destroying muscle tissue. We suspect that some people are super susceptible to statins and that the statins can cause myositis in this vulnerable population.

Inclusion Body Myositis:

This autoimmune condition is also an inflammatory disease of the muscles. It is abbreviated IBM. It can cause weakness in the arms, wrists and thighs. IBM can also cause difficulty swallowing. A muscle biopsy is necessary to diagnose this devastating condition.

Treatment is challenging. Doctors often prescribe cortisone-type drugs for both polymyositis and IBM. Sadly, though, many patients do not get a great deal of benefit from steroids.

Dermatomyositis:

In addition to muscle weakness, people with this autoimmune disease can also develop a skin reaction. According to the John Hopkins Myositis Center

“The rash that accompanies the symptoms of muscle weakness looks like patchy, bluish-purple discolorations on the face, neck, shoulders, upper chest, elbows, knees, knuckles, or back. Some people may also develop calcium deposits, which appear as hard bumps under the skin.”

Although myositis is listed as a potential side effect of some statins, it is considered rare. That said, we have received a surprising number of reports of statin-induced myositis. Most have not resolved as successfully as well as the gentleman who wrote to us about his wife.

Readers Report Statins Can Cause Myositis:

Carolyn developed dermatomyositis after taking simvastatin:

“About seven years ago I was prescribed simvastatin as a preventive because of long-term type 1 diabetes. The drug was supposed to protect my heart even though my cholesterol levels were very good. I questioned it but both a cardiologist and my primary care doctor talked me into it.

“Shortly after taking it, I started feeling weakness in my legs. I also developed a very bad rash in my hair. After much work with a dermatologist I was referred back to my primary care physician. A blood test revealed high CK levels demonstrating muscle breakdown.

“The statin was stopped but the damage had been done. I was referred to an rheumatologist. I was diagnosed with dermatomyositis. I am doing ok, better than most people, but stairs are very difficult, and balance is not good. Doctors really don’t think statins are all that bad and continue to push them.”

Chris shares this story:

“I, for one, have had my health and my life destroyed by statins. Myositis is the tip of the iceberg for my last 16 years of disability. Muscle biopsy confirmed, brain biopsy confirmed apoptosis (programmed brain cell death), electron microscopy confirmed mitochondrial mutation most similar to Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-Like Episodes (MELAS).

“Yet all of my doctors who so eagerly prescribed these drugs to my healthy 29 year old body vehemently denied that statins could cause anything but rainbows, unicorns and puppy dogs…and arrogantly spewed the phrase ‘Tell me again how your Google Search trumps my medical degree.’

“The biopsy findings were confirmed by Drs Beatrice Golomb and Doug Wallace to be the result of my 3 years of statin use.”

Allison shares a tragic story. She thinks statins can cause myositis:

“My sister is in a nursing home now because of polymyositis. She has had this disease for about 15 years. We believe it started with her taking Lipitor (atorvastatin). She used to be able able to walk 2-3 miles per day. All of a sudden she starting falling down, then falling down more and more. She went from being on a cane, to using a walker to a wheelchair to now…completely bed-ridden in a nursing home. All within 15 years.

“I HATE HOW SOME DOCTORS PUSH THESE STATINS. For some people, they may work, but for the 10-20% of people they harm….it’s just not worth it in my opinion. My doctor prescribed a statin to me due to my cholesterol being a point or two over the norm. Well, I refuse to take it! Seeing my sister just cry and cry because she cannot do anything for herself is heartbreaking. She is only 66 and has been in a nursing home for 3 years. She needs help to turn over or get out of bed.

“They have to bathe her. She wears Depends. It is so sad seeing what has happened to her.”

Here is Carrie’s story. She too thinks statins can cause myositis:

“I took Zocor (simvastatin) for 6 months, then Lipitor (atorvastatin) for 1.5 yrs, then Pravachol (pravastatin) for 1.5 yrs, then finally Crestor (rosuvastatin) for 3 months, all to lower my cholesterol.

“I was unaware of the muscle damage these drugs could cause. Each time I told my endocrinologist that I was experiencing muscle pain and discomfort, he would then either lower the dose or the frequency. He never mentioned to me that these medications can cause serious, irreversible muscle damage. Not a word!

“Long story short, I now suffer from polymyositis, an extremely painful and debilitating autoimmune disorder. No remission! I suffer daily pain, weakness, even while daily taking one of the strongest pain narcotics available.”

Patricia developed inclusion body myositis:

“I was first given Crestor in 2005, and after three weeks, I stopped taking it due to arm muscle pain, and headaches. Because of a slight A-fib problem I was sent to a cardiologist. He told me I needed to take Crestor and after one week my ankles hurt so bad I could hardly stand up. I stopped the statin again. The doctor was highly skeptical of my reason, so I changed doctors. That was in 2008.

“I then developed foot drop, neuropathy in my ankles, my left fingers and wrist. I was finally diagnosed with sporadic Inclusion Body Myositis in 2013 using the biopsy for proof, and probably from exposure to the Crestor. I am now in a walker, leg braces, have dysphagia [difficulty swallowing], choke and fall down, cannot open anything, or hold a mixing bowl. Had to hire a housekeeper, spend money on therapy, and will eventually be in a wheelchair and move into assisted living.”

Peter lives in Australia. He also thinks statins can cause myositis:

“I have been diagnosed with statin-induced Inclusion Body Myositis (biopsy result). I had been reading a book by Dr. Duane Graveline called “Lipitor the Thief of Memory” that highlights statin side effects. I live in Australia, and info here is certainly biased on the side of Pharma as no doubt it is in the US.

“The distal muscles in the body start to weaken, then the proximal muscles. And on it goes. Headaches, burning muscles, legs giving way, and, as we would say in Aussie, one tends to go arse-up, and then it is nearly impossible to rise unaided from the ground. You probably all know what I am talking about. The Site for more info is SpaceDoc.com. Dr. Graveline was a doctor and astronaut in the early space days and a family doctor. Worth a look at what he says.”

Do Doctors Think Statins Can Cause Myositis?

We suspect that most health professionals believe that conditions like polymyositis, dermatomyositis and inclusion body myositis are extremely rare and not caused by statins. The FDA has pretty much buried “myositis” along with dozens of other adverse reactions in the official prescribing information for statins. We have no idea how common or rare statin-induced myositis really is. We pretty sure that statins can cause myositis. No one should stop statins suddenly. Always discuss statin side effects with the prescribing physician.

This condition is very hard to diagnose and treat. It can be irreversible. Anyone who develops severe muscle weakness while taking a statin should report it immediately to a physician and ask for a thorough medical workup.

Share your own statin story in the comment section below.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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I lowered my cholesterol with flaxseed meal and walnuts.

I took 10 mg simvastatin for 20 months. At first, I had muscle pain and cramping and attributed them to my workouts at the gym. Then I had shortness of breath and new pain in non-weight bearing joints. I quit the statin without my doctors approval, and when I told her, she was unreasonably furious. I had made it known to her that I didn’t want to take the drug in the first place, and I felt that if I sought her approval to stop it, I’d only get into an argument.

It’s been 10 years since I started that drug, and my health has been ruined. I have worsening pain, numbness, and weakness. I can’t drive and need a cane to walk. After numerous nerve tests and a muscle biopsy that all produced abnormal results, no doctor has given me a diagnosis beyond ideopathic polyneuropathy and denervation atrophy of the muscle. If fact, the neurologist who did the biopsy pointedly reported that I had no myopathy. As soon as I tell them that my problems started after taking a statin, it seems that I become a persona non grata. Patients who get any diagnosis of post-statin pain seem to be extremely fortunate and rare.

My husband and I (both in low 70s now) were prescribed Pravastatin about 20 years ago. He takes 40 mg every day; I’m petite and take it only 3 times weekly (with my MD’s approval). Back when we started, you all often discussed CoenzymeQ10 on the show, so we’ve taken that as well, these days in 100mg gelcaps. As far as we can tell, so far so good. Does the science exist that suggests CoQ10 might also help these myo-sufferers?

LJ in Dallas

I also believe that statins can cause Parkinsonism. My husband went from marathon runner to wheelchair bound in about 7 or less years

My mom had the same experience, and doctors insisted it was not the Crestor. She went from severe muscle cramps, to muscle weakness and wound up in a wheelchair, completely unable to even stand. And then the dementia from the statin kicked in.

I looked for reputable studies verifying how statins improved patient outcomes over the years. I was disappointed to find that over the period studied, statins added 9 to 15 days to life. I’m not sure that this is sufficient for me to embark on say ten years of medication with significant risks.

I get upset seeing articles (not in the Peoples pharmacy) and doctors saying that statin side effects are the same as with a placebo. I don’t believe that people get serious muscle problems with a placebo. I have high cholesterol and my doctor got me to try various statins, all of which really act the same way and cause the same kind of problems. Fortunately for me, after I stopped the pain went away each time, but clearly not everyone is so lucky. In some cases though, the problem is caused by people not stopping the drug immediately. I think that this goes for any drug; if you have a serious side effect you need to stop taking the drug.

We ALWAYS encourage people to consult the prescriber! People should not stop taking a medication without medical supervision.

My 90-year-old mother has a similar story to Allison’s. Took several statins for 16 years. Began to fall to the ground, and doctors denied it was due to statins. About 10 years ago, she stopped taking statins, stopped falling, and partially recovered her mobility. What strikes me is that doctors continue to deny these effects of statins despite increasing evidence about the effects of statins and continue to pressure people to take statins.

I was given Crestor and right away had horrible body pain – felt like the flu! I stopped taking it after 2 Days. I was 100% better in 24 hours. My cardiologist saw my lipid level and suggested 20 mg of a statin- 3x a week.
The endocrinologist who tried me on Crestor was amazed at my lipid level drop 80 points. No muscle pain with that one.
But I will be evaluating my body more closely!

I am a 73 year-old who does Water Aerobics Swimming 1 1/2 2x a week. Now insomnia seems to recur, and I want to reduce it.

After a lifetime (58 yrs.) of not taking any pharmaceuticals I (stupidly) agreed to take pravastatin. I had to be taken off of it after 3 months due to extreme muscle pain. My doctor convinced me I still needed to take something for cholesterol and put me on Zetia. Three days later I could not even get out of bed. The only thing I could move was my head, and that made my neck hurt! I have ALL of the symptoms listed in this article.
I stay away from Statins. They are poison.

I take only 10 mg of simvastatin and have no side effects but worry if I am missing early-onset of any of these conditions. None of the articles or comments mention the dosages taken by people with adverse reactions to statins. Can you enlighten me.?

My husband was prescribed Pravastatin in combination with Zetia for cholesterol control. He began having balance problems unrelated to vertigo. We asked his cardiologist if we could stop those 2 drugs for several weeks and he agreed. Within 2 weeks almost all his balance issues were resolved. The cardiologist has agreed to no Pravastatin but told him to continue the Zetia. So far, balance issues have not resumed.

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