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Home / About Myositis / Inclusion Body Myositis

Inclusion Body Myositis

Inclusion body myositis (IBM) is an inflammatory muscle disease characterized by progressive muscle weakness and wasting. Individuals with IBM usually develop symptoms after the age 50; however, some patients may present with symptoms as early as their 40’s. Patients typically develop difficulty in swallowing (dysphagia), weak fingers and wrists, atrophy of the forearms and thigh muscles.

Unlike other forms of myositis, IBM is approximately two times more common in men than in women.

Symptoms

  • muscle weakness often progresses slowly over months or years
  • weakness in the thighs, wrists and fingers
  • difficulty swallowing (dysphagia)
  • patients may have a history of frequent falls

Diagnostic Tests

There is not a single test that identifies IBM. The diagnosis is based on a combination of information and tests. Your doctor will ask for a complete medical history and will perform a thorough physical examination.

Certain blood tests, nerve conduction studies and electromyography, and muscle MRI studies may be ordered.  A muscle biopsy is the most specific test for the diagnosis of IBM. The muscle biopsy is a minor surgical procedure. A local anesthetic is applied, and a small piece of muscle is removed – usually from a thigh muscle or the biceps muscle.

A muscle biopsy remains a critical diagnostic test to determine whether you have inclusion body myositis.

Treatment

Unfortunately, many patients with inclusion body myositis do not respond to medications that suppress the immune system. The mainstay of therapy is physical and occupational therapy and in individuals with swallowing difficulties, speech and language therapy.

Disease Education Video Series

Watch our 5 part series on Inclusion Body Myositis. We cover disease overview, Signs & Symptoms, Diagnosis, Treatment and Living with IBM.

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All information contained within the Johns Hopkins Rheumatology website is intended for educational purposes only. Physicians and other health care professionals are encouraged to consult other sources and confirm the information contained within this site. Consumers should never disregard medical advice or delay in seeking it because of something they may have read on this website.

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Myositis Disease Information

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Our Inclusion Body Myositis Disease Education Videos cover topics including disease overview, signs and symptoms, diagnosis, treatment and lifestyle considerations.

Support IBM Research at Johns Hopkins

Please partner with us as we work to better understand and treat IBM.

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