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Understanding IBM

What is Inclusion Body Myositis?

Inclusion body myositis (IBM), also commonly called sporadic inclusion body myositis, is an inflammatory muscle disease that is characterized by progressive muscle weakness and deterioration. Beginning in middle or later life, IBM typically affects individuals over the age of 40, and is seen more often in men than in women.

Living with IBM

The debilitating muscle disease usually first affects a patient’s mobility. Beginning its attack in the quadriceps muscles, IBM makes it difficult for a patient to stand or walk without assistance. Progressing slowly, it affects muscles in the patient’s wrists, and forearms, causing difficulty in using his/her fingers for simple activities like gripping. Over time, the patient is prone to tripping and falling, may need to use a wheelchair, and can have trouble with choking or aspiration, as swallowing muscles are weakened.   

What causes IBM?

The cause of IBM is unknown. Various triggers including viruses, genetics, and exposure to certain drugs are suspected causes. With IBM, such a trigger results in the body’s immune system turning against its own muscle and damaging muscle tissue in an autoimmune process.      

What are treatment options available for IBM?

There is currently no treatment that has been shown to slow or reverse the progression of IBM. While maintenance of general health through exercise and diet is generally recommended, patients who are affected by IBM need more than these general guidelines. Affecting up to 70 people per million in the US, IBM is considered a rare disease and finding the cause of and treatment for IBM requires funding and focused research. At present, there are a few ongoing clinical trials that patients affected by IBM can consider. Visit the IBMF clinical trials page to learn more.

Prevalence & history

IBM prevalence estimates vary widely across different ethnic populations. Per million estimates by are:

  • 1.0 in Turkey
  • 4.7 in the Netherlands
  • 10.7 in Connecticut, USA
  • 14.9 in Western Australia
  • 71 in Olmsted County, USA.

Age 50 or greater prevalence estimates are approximately 3-fold higher.

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