Question: I was diagnosed with inclusion body myositis about six years ago. I have extreme weakness in my legs, ankles, arms and have difficulty swallowing. What is the long term prognosis as to life expectancy and further health problems, and is there anything that can be taken to slow down or halt its progress? I am a 63-year-old male. I walk with a cane or walker but am sure to need a wheelchair in the near future.

Dr. Hibberd's Answer:

Inclusion body myositis (IBM) is an inflammatory disorder of muscle tissue that commonly involves proximal (close to the trunk of the body) and distal (further away from the trunk) muscle groups. Men are more often affected than women, and approximately 50% of victims will develop difficulty swallowing. This disorder is not well understood, but appears to be similar to other inflammatory and auto immune muscle disorders such as polymyositis (PM). The immune system seems to be activated, yet the response to anti-inflammatory, immune suppressant, and cortisone preparations has been poor. The cause is not known, treatment is not well defined, and outlook is difficult to predict.

There appear to be at least two varieties of this condition, one genetic, and another suspected to be triggered by a retrovirus (HIV 1, to name one).

IBM is actually a group of disorders characterized by protein-like material within the affected muscle fibers. Researchers at Harvard have proposed treatment with drugs, such as Orencia and Raptiva, which are FDA-approved for other disorders, but may be worth consideration for treatment in selected IBM cases.

Stem cell treatment is presently being proposed for those affected with the genetic variety, but results are not yet available. Stay tuned for further news. Two websites, www.myositis.org and www.aarda.org, are good overview sites.
This condition is researched by investigators involved with muscular dystrophy, and we may well find there are some common threads that may help us provide treatment of various muscular dystrophies as well. Watch for FDA approval of new medications for IBM in the near future.