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. 

NIH Patient Recruitment for Inclusion Body Myositis Clinical Trials


Myositis Association
1737 King Street
Suite 600
Alexandria, VA   22314
Tel: 703-299-4850 800-821-7356
Fax: 202-466-8940

American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Est Detroit, MI   48021-2227
Tel: 586-776-3900 800-598-4668
Fax: 586-776-3903

Related NINDS Publications and Information

Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.


Inclusion Body Myositis from Medscape Reference - quite technical

Inclusion body myositis (IBM)  from Muscular Dystrophy Campaign

INCLUSION BODY MYOSITIS a good, slightly technical, pdf overview on IBM both sporadic and hereditary types by Bill Tillier

INCLUSION BODY MYOSITIS a site by Bill Tillier

Course and therapy of inclusion body myositis from UpToDate

Novel Therapeutic Approaches : Is Inclusion Body Myositis a Primary Degenerative Disease?  from Medscape News - quite technical

Treatment & Management from Medscape Reference

Inclusion Body Myopathy 2  Distal Myopathy with Rimmed Vacuoles (DMRV), IBM2 from National Center for Biotechnology Information, U.S. National Library of Medicine

Sporadic inclusion body myositis from Orphanet

Inclusion Body Myositis – Treatment and Symptom Management PDF

The current status of treatment for inclusion-body myositis PDF

Treatment Information, Diagnosis and Symptoms from John Hopkins Medicine

Inclusion Body Myositis Treatments in Alternative Medicine

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