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  Inclusion Body Myositis 
Synonym(s):  Inflammatory Myopathy
Reviewed  11-08-2001  

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What is Inclusion Body Myositis?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations
Related NINDS Publications and Information

What is Inclusion Body Myositis?
Inclusion body myositis (IBM) is an inflammatory muscle disease characterized by slow and relentlessly progressive muscle weakness and atrophy of the muscles. The disorder is very similar to another inflammatory myopathy called polymyositis. In fact, IBM is often diagnosed in cases of polymyositis that are unresponsive to therapy. However, IBM has its own distinctive features. The onset of muscle weakness in IBM is generally gradual (over months or years). Also, IBM, which occurs more frequently in men than women, affects both the proximal (closest to the center of the body) and distal (farthest from the center of the body) muscles. There may be weakness of the wrist and finger muscles and atrophy of the quadricep muscles in the legs. Atrophy or shrinking of the forearms is also characteristic. Difficulty swallowing (dysphagia) occurs in approximately half of IBM cases. Symptoms of the disease usually begin after the age of 50, although the disease can sometimes occur earlier. Falling and tripping are usually the first noticeable symptoms of IBM. For some patients the disorder begins with weakness in the hands causing difficulty with gripping, pinching, and buttoning.

Is there any treatment?
There is no standard course of treatment for IBM. The disease is unresponsive to corticosteroids and other immunosuppressive drugs. Some evidence suggests that intravenous immunoglobulin may have a slight, but transient, 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 also appears to be unaffected by the present treatments.

What research is being done?
The NINDS conducts and supports a vigorous program of research aimed at discovering new ways to diagnose, treat, and, ultimately, cure neuromuscular disorders including inflammatory myopathies such as IBM.

Select this link to view a list of studies currently seeking patients.

 Organizations

American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe
East Detroit, MI 48201-2227
aarda@aol.com
http://www.aarda.org
Tel: 586-776-3900 800-598-4668
Fax: 586-776-3903

Myositis Association
755 Cantrell Avenue
Suite C
Harrisonburg, VA 22801
maa@myositis.org
http://www.myositis.org
Tel: 540-433-7686
Fax: 540-432-0206

Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718-3208
mda@mdausa.org
http://www.mdausa.org/
Tel: 520-529-2000 800-572-1717
Fax: 520-529-5300

Related NINDS Publications and Information

  • NIH Myositis Outcomes Workshop

  • Health Disparities Working Group Meeting: Cognitive and Emotional Health Myositis Outcomes Workshop


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    All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.


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    National Institutes of Health
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