Lovastatin (Mevacor) was the very first statin marketed in the US. The FDA gave the drug its blessing in 1987. That means statins have been available for more than three decades. They are among the most prescribed drugs in the world and are perceived by many health professionals as super safe. Over time, though, we have discovered a surprising number of serious side effects. The connection between statins and dermatomyositis has been mostly overlooked.
What Is Myositis?
If you see the suffix “itis” you know there is inflammation afoot. Consider conditions such as appendicitis, arthritis, bronchitis, bursitis, colitis, conjunctivitis, cystitis, dermatitis and tendinitis.
Substitute the word “inflammation” and the word “of” and then add an organ system. Voila! Arthritis equals inflammation of the joints. Dermatitis equals inflammation of the skin. You get it.
What about myositis? “Myo” means muscle. When combined with “itis” you end up with inflammation or destruction of muscle tissue.
There is a growing awareness that statin-type cholesterol-lowering drugs can occasionally trigger various kinds of myositis, including polymyositis, inclusion-body myositis and something called dermatomyositis (DM).
What Is Dermatomyositis?
I just told you that if you combine the words inflammation and of, plus an organ you could figure out where the “it” is. But now it gets confusing. You might legitimately assume that dermatomyositis would be some sort of skin/muscle inflammation. You would be right, but…it’s a bit more complicated.
The Johns Hopkins Myositis Center is one of the most comprehensive medical centers for myositis problems in the world.
“Dermatomyositis is a rare disease that causes muscle inflammation and skin rash. It’s one of a group of muscle diseases that cause muscle inflammation and swelling. It’s different from other muscle diseases because it also causes skin problems. Dermatoyositis is the term used to describe both muscle and skin symptoms.”
The experts at Johns Hopkins go on to note that:
“Possible complications for some people with dermatomyositis include lung disease, heart disease, or cancer. These can make treatment more difficult.”
Although dermatomyositis is only supposed to cause inflammation of the skin and muscles, it can apparently also affect the lungs and heart. Confusing, eh?
What Are Symptoms of Dermatomyositis?
Some symptoms of DM include: redness and swelling of the top of the eyelids, rash and/or reddish spots on skin around the nails, elbows, knuckles, knees, upper chest and toes. There is often muscle pain and weakness, especially around the back, neck, shoulders and hips.
Some people report difficulty getting up from a chair because their muscles are so weak. Then there is general fatigue that makes it hard to perform tasks that were once easy-peasy. Sometimes they notice calcified, hard lumps underneath their skin. Once the condition has progressed, some individuals have difficulty swallowing (dysphagia).
We suspect that most health professionals have never heard of dermatomyositis. If they have, they probably do not consider statins and dermatomyositis connected in any way. They may also confuse myalgia with myositis.
Myalgia, which is also linked to statins, is often downplayed. It may be attributed to the aches and pains of getting older. If you would like a clear understanding of the difference between myalgia and myositis, please check out this link.
A reader recently asked us about a connection between statins and dermatomyositis:
“I recently had a skin biopsy and was diagnosed with dermatomyositis. Since then, I have had a chest x-ray, MRI, PFT [pulmonary function test], EMG and multiple blood tests – expensive even though I have health insurance. Luckily, they have all come back normal. I do have some itchy patches of skin on my arms and lower back, though.
“I don’t have problems swallowing or getting up from a chair, as some victims do. Last winter I did have the worst hand pain ever and would stick my hands in very hot water to help with the pain. The purplish-blue rash was all over my chest and back but not on my face or hands. I also have had some trouble with patchy vision and now have an appointment with a retina specialist.
“From what I’ve read, prednisone is often the treatment. However, I read about side effects and would like to avoid them if possible. I will soon meet with the specialist to go over different options. Can you tell me if there is any new research? I am perplexed, scared and frustrated – please help!”
Statins and Dermatomyositis:
A number of readers have written to us about an association between DM and statins. We wondered if this person might have also been taking a statin before developing symptoms.
Here is her response:
“I was on atorvastatin, at 80 mg, for about four years. Both my parents died from heart disease, so my doctor prescribed it as a preventative when my cholesterol numbers reached borderline status. I stopped the drug on my own, against my cardiologist’s advice.
“The itchy, patchy skin is the most obvious symptom so far. I seem to do okay with topical ointments on my arms and I take one Tylenol and one naproxen every day. Of course, I know I can’t take them long term, but after reading about prednisone, I’d rather not take that either. This is a very weird journey!”
The FDA on Statins and Dermatomyositis:
There is not a lot of information about statin-induced dermatomyositis. If a physician looked at the official prescribing information for atorvastatin (Lipitor), DM is not listed. Ditto for rosuvastatin (Crestor).
On the other hand, it is mentioned in passing with simvastatin, pravastatin and lovastatin. It is often lumped together under the heading “Postmarketing Experience.” The FDA makes it appear to be an afterthought, though.
DM is included with many other serious statin side effects such as:
“An apparent hypersensitivity syndrome has been reported rarely which has included some of the following features: anaphylaxis, angioedema, lupus erythematous-like syndrome, polymyalgia rheumatica, dermatomyositis, vasculitis, purpura, thrombocytopenia, leukopenia, hemolytic anemia, positive ANA, ESR increase, eosinophilia, arthritis, arthralgia, urticaria, asthenia, photosensitivity, fever, chills, flushing, malaise, dyspnea, toxic epidermal necrolysis, erythema multiforme, including Stevens-Johnson syndrome.”
We suspect that many health professionals’ eyes glaze over before they even get to dermatomyositis. It’s a bit like listening to a long list of scary side effects on some non-statin prescription drug commercials on television. Once the voice-over says stuff about kidney failure, blood clots, strokes, lymphoma, tuberculosis or pancreatitis, most people have tuned out.
Research on Statins and Dermatomyositis:
“Statins cause a spectrum of muscle-related adverse events, including autoimmune myopathies such as dermatomyositis (DM).”
The authors go on to note that:
“The most common side effect reported with statin use is myalgia, but a wide range of additional muscle-related events exists. Drug-induced dermatomyositis (DM) is not new, as there have been multiple cases described in the literature from a variety of therapeutic agents. The onset of DM or amyopathic dermatomyositis (ADM) from statin use poses a unique challenge secondary to the widespread usage of the drug.
“DM is an autoimmune-mediated, idiopathic, inflammatory myopathy that frequently presents with proximal muscle weakness and cutaneous manifestations, although not always concurrently. As with other autoimmune disorders, DM is believed to develop in genetically predisposed individuals who experience an environmental trigger (such as drugs).”
Doctors have reported an association between statins and dermatomyositis beginning in 1992. We suspect, though, that many cases go unrecognized and unreported.
Carolyn reported a link between statins and dermatomyositis:
“My doctor prescribed simvastatin because I have type 1 diabetes. I’ve had it for 50+ years. Even though my cholesterol levels were great, he wanted me to take it as a preventative
“After just a short time the muscles in my legs became so weak I had a hard time coming up my basement stairs and getting out of a chair. I broke out in a very severe rash in my hair and around my eyes and nose and fingernails.
“Eventually, blood work showed my CK levels were very high. The doctor took me off the medication. After a month my symptoms did not get better and I was eventually diagnosed with dermatomyositis. I was put on high doses of prednisone to get my CK levels down. Although I am on Imuran now, I still have a lot of muscle weakness. To climb stairs, I need a handrail to help pull me up. Sad story!”
Dealing with Myositis:
Treatment of myositis of any form can be challenging. Corticosteroids like prednisone are frequently prescribed, but such drugs can cause long-term complications.
Karen describes what it can be like:
“I’ve been on prednisone for 10 years for dermatomyositis. That’s not a typo — 10 years. The longer a person takes prednisone, the more likely it becomes that they cannot come off. I’ve taken doses as high as 60mg, but have lived at 8mg daily for the past few years. I’ve tried several times to come off, but once I drop below 7mg, my autoimmune disease spirals out of control, and I’m back to a mega-high dose and start the slow process of reducing all over again.
“Prednisone is a deal with the devil. It saved my life when I was first diagnosed, but it continues to exact a heavy price on other aspects of my health in exchange. Osteoporosis, vertigo, thinned skin, and persistent low-level depression have taken quite a toll on my quality of life.”
Other anti-inflammatory medications such as methotrexate or azathioprine may also be employed. We hope that health professionals will become aware of the connection between statins and dermatomyositis (and other inflammatory conditions) so they can try to prevent this drug reaction from getting out of control. No one should ever stop taking any prescribed medications without talking to the prescribing physician.
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