Inclusion body myositis

What is inclusion body myositis?
Inclusion body myositis (IBM) is one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic, progressive muscle inflammation accompanied by muscle weakness. The onset of muscle weakness in IBM is generally gradual (over months or years) and affects both proximal (close to the trunk of the body) and distal (further away from the trunk) muscles. Muscle weakness may affect only one side of the body. Falling and tripping are usually the first noticeable symptoms of IBM. For some individuals, the disorder begins with weakness in the wrists and fingers that causes difficulty with pinching, buttoning, and gripping objects. There may be weakness of the wrist and finger muscles and atrophy (thinning or loss of muscle bulk) of the forearm muscles and quadricep muscles in the legs. Difficulty swallowing occurs in approximately half of IBM cases. Symptoms of the disease usually begin after the age of 50, although the disease can occur earlier. IBM occurs more frequently in men than in women.

Is there any treatment?
There is no cure for IBM, nor is there a standard course of treatment. The disease is generally unresponsive to corticosteroids and immunosuppressive drugs. Some evidence suggests that intravenous immunoglobulin may have a slight, but short-lasting, beneficial effect in a small number of cases. Physical therapy may be helpful in maintaining mobility. Other therapy is symptomatic and supportive.

What is the prognosis?
IBM is generally resistant to all therapies and its rate of progression appears to be unaffected by currently available treatments.

What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS), National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Environmental Health Sciences (NIEHS) and other institutes of the National Institutes of Health (NIH) conduct research relating to IBM in laboratories at the NIH and support additional research through grants to major medical institutions across the country. Currently funded research is exploring patterns of gene expression among the inflammatory myopathies, the role of viral infection as a precursor to the disorders, and the safety and efficacy of various treatment regimens.

Patient recruitment for inclusion body myositis clinical trials
At NIH Clinical Center
Throughout the U.S. and Worldwide

Organizations
Myositis Association
1737 King Street, Suite 600
Alexandria, VA 22314
https://www.myositis.org/
703-299-4850, 800-821-7356

American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe, MI 48021-2227
https://www.aarda.org
586-776-3900, 800-598-4668

This information was developed by the National Institute of Neurological Disorders and Stroke.

National Institute of Neurological Disorders and Stroke. NINDS Inclusion Body Myositis Information Page. Available at: https://www.ninds.nih.gov/disorders/inclusion_body_myositis/inclusion_body_myositis.htm. Last accessed Dcember 6, 2017.

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