Q: I was recently diagnosed with inclusion body myositis at the University of California Medical Center in San Francisco. I am an 86-year-old male. What can you tell me about this disease and what it’s treatments are?
A: Inclusion body myositis (IBM) is one of a group of muscle diseases known as inflammatory myopathies. The diseases are characterized by chronic, progressive muscle inflammation and weakness. It usually begins after age 60 but can occur earlier and affects men more frequently than women. It is not uncommon for it take years to be diagnosed correctly.
In IBM weakness generally progresses gradually over a period of months or years and affects both the truck and the limbs. The weakness can occur on one or both sides of the body. Initial signs and symptoms may begin with weakness in the wrists and fingers, causing difficulty with pinching and gripping items. Thinning or loss of muscle bulk of the forearm and quadricep muscles may also be present. Half of all IBM sufferers will also experience difficulty swallowing. Falling is common.
Unfortunately, there is no cure or standard course of treatment. Corticosteroids and immunosuppressive drugs are ineffective for most. Intravenous immunogloblin may offer a slight, short-term benefit but only in a small number of cases. Physical therapy can be helpful in maintaining mobility. Beyond that, treatment is supportive and based on symptoms displayed.
I cannot give you any outlook on future because I don’t know the rate of your progression and severity of your current symptoms so I urge you to speak with your physician about what you may be able to expect in the future and how to maintain as much independence as you can. You can also learn more online at The Myositis Association’s website.
Readers who are interested in learning more about how to deal with pain can order Dr. Gott’s Health Report “Managing Chronic Pain” by sending a self-addressed, stamped number 10 envelope and a $2 US check or money order to Peter H. Gott, MD Health Reports, PO Box 433, Lakeville, CT 06039. Be sure to mention the title or print an order form from www.AskDrGottMD.com.
