Does anyone know about Inclusion Body Myositis (IBM)?

Sorry if you have read this already.

It is an underdiagnosed condition as it occurs mainly in the elderly with multiple comorbidities and is frequently misdiagnosed as polymyositis and wrongly treated with steroids. Treatment-resistant 'polymyositis' in the over 50s is often. Theories have proposed it as an autoimmune or viral-induced disorder.

There is no effective treatment for the disease but high quality RCTs (randomised clinical trials)are few. Many therapies have been tried, unsuccessfully.Consensus is that steroids and conventional immunosuppressive therapies are not beneficial clinically. High-dose prednisolone paradoxically worsens strength whilst decreasing inflammation, possibly due to increased amyloid accumulation. Intravenous immunoglobulin is very expensive and ineffective.9 More specific immunotherapies require exploring.

There tends to be very slow progression but those who develop symptoms at an older age tend to progress more rapidly. Progressive dysphagia is associated with a poorer prognosis and quality of life.w

Recent trials have studied intravenous infusions of human immunoglobulin (IVIG) in IBM. Results have been contradictory, but provide no firm evidence of enduring benefit. Further trials continue, but currently the costs and side-effects do not justify routine treatment of IBM patients with IVIG.

The best people to contact to see if there are any current trials and for information...

Institute of Neurology, UCL

National Hospital for Neurology & Neurosurgery

Queen Square

London WC1N 3BG

Telephone +44 (0) 020 7837 3611

Fax +44 (0) 020 7278 5069

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