I've been diagnosed. Now what?
Patients with polymyositis and dermatomyositis generally respond to treatment in a month or two. The active period of the disease is usually 2-3 years in both children and adults, but patients with cardiac or pulmonary complications have a longer active period than others. IBM patients have a slow-progressing disease, with no effective treatment.
Is there a cure?
A review of many dermatomyositis and polymyositis cases found that 20% of the patients recover completely, although we don't say they are "cured." These patients will never have another active period, or flare. Often doctors will say that people are "in remission" when there is no sign of disease activity. Others will have flares for a long time before the disease is controlled, and some will have periodic flares all their lives. These outcomes depend in part on the speed of diagnosis and treatment. Patients diagnosed with polymyositis who don't respond to treatment should ask to be tested for inclusion-body myositis.
Do people die from myositis?
Research shows that the mortality rate after several years of the disease is approximately 15%, which reflects the higher rate of mortality in patients with connective tissue diseases, cardiac involvement or cancer.
Do IBM patients have flares?
There is no effective treatment for inclusion-body myositis. This form of myositis causes people to get slowly weaker rather than experience flares. Sometimes doctors give patients a trial course of prednisone followed by methotrexate or azathioprine. If there is no improvement in a month or two, the drugs are discontinued. Patients with IBM need to anticipate the imminent limitations in their strength and mobility and prepare for each change.
How soon will I respond to medication?
Although every case varies, blood muscle enzymes usually return to normal in about 4 to 6 weeks and polymyositis and dermatomyositis patients gradually regain strength in 2 to 3 months. Prednisone is the most common treatment. Methotrexate or azathioprine is usually added for better long-term control of the disease and to avoid prednisone's long-term side effects. In cases where people either don't respond to prednisone or have serious side effects, doctors may prescribe intravenous immune globulin (IVIG) and other immunosuppressive medications including cyclosporine (Neoral, Sandimmune), tacrolimus (Prograf) or mycophenolate (Cellcept). Other, newer drugs are being tested for myositis. Ask your doctor if you are eligible for the clinical trials now being conducted.
What is autoimmunity, and what causes an autoimmune disorder?
The body's immune system normally fights infections, viruses and other harmful things by producing antibodies and white blood cells called lymphocytes, a process known as the immune response. In someone with an autoimmune disorder, the immune response is overactive and doesn't properly "turn off." The immune system is misdirected and essentially turns on itself, attacking the body's own normal, healthy tissue. In the inflammatory myopathies, these overactive immune cells target the muscles, causing inflammation. Read more about autoimmunity.
How will pregnancy and nursing affect and be affected by myositis?
Some people with dermatomyositis (DM) first notice the signs (for example, rash and weakness) during pregnancy. For patients who already have myositis and become pregnant, the weakness and other symptoms can become worse, or flare, during pregnancy. For children with juvenile myositis, it's difficult to predict how myositis will affect them later in terms of fertility, but there have been enough studies with positive pregnancy outcomes for these children and their families to remain optimistic about the possibility of having a healthy pregnancy.
How can I find other myositis patients?
How can I find a physician familiar with myositis?
Find some ideas for finding a physician who has experience with your disease at "Find a Physician" on TMA's website under "Patients, Families and Caregivers" on TMA's website at www.myositis.org.
Are stem cells a treatment for myositis?
Recent years have witnessed an explosion of stem cell "therapy centers" that purport to cure diseases, including many forms of myositis. The Myositis Association has received a number of inquiries regarding fat-derived stem cell treatments. These stem cell therapy centers promise to cure a myriad of diseases by using patients' own fat derived "stem cells."
TMA's Medical Advisory Board cautions against the use of such treatments, since there is very little scientific data to validate the claims that these stem cell treatments provide a viable treatment option or cure. Furthermore, there are risks associated with these treatments including potentially exacerbating the inflammation and thus worsening the underlying muscle disease, promoting tumor and cancer growth, and unnecessary risks to patients from the stress of surgery and anesthesia. The scientific evidence that these fat-derived stem cells stop the progression of myositis is non-existent, and favorable reports are based on purely anecdotal experiences, which have not been validated. If these treatments are to be tested, they should be examined in a strictly research environment through a properly designed randomized clinical experimental trial. These treatments should not be advertised as "cures" and can cost the patient many thousands of dollars out of pocket.
Until there is scientific evidence supporting using fat-derived stem cells as a treatment for myositis, the potential risks outweigh the potential benefits.
Updated September 2014