What is the treatment for Inclusion Body Myositis (IBM)?

From the Guidelines

There is currently no cure or specific treatment for Inclusion Body Myositis (IBM), and management focuses on supportive care and symptom management. The treatment of IBM typically involves immunosuppression using the same treatment algorithms used for DM and PM, with the goal of suppressing muscle inflammation, although the disease is often resistant to standard immunotherapy 1.

Treatment Options

• Physical therapy and occupational therapy are essential in helping to maintain muscle strength and function for as long as possible.
• Regular exercise, particularly supervised strength training and range-of-motion exercises, can help slow muscle deterioration.
• Assistive devices such as braces, walkers, or wheelchairs may be necessary as the disease progresses.
• Immunotherapy, including intravenous immunoglobulin (IVIG), may be efficacious in patients with severe dysphagia, although the therapeutic benefit may be lost over time 1.

Disease Management

• Speech therapy may help with swallowing difficulties, and in severe cases, a feeding tube might be required.
• Regular monitoring by a neurologist or rheumatologist experienced in neuromuscular disorders is essential to manage complications and adjust supportive care as needed.
• IBM is believed to involve both inflammatory and degenerative processes, which may explain why traditional immunosuppressive therapies have limited success 1.

Ongoing Research

• Research into potential treatments is ongoing, focusing on both the inflammatory and degenerative aspects of the disease.
• While most treatment trials involving patients with IBM have been small and yielded little with respect to improved outcomes in strength and muscle mass, ongoing research aims to find more effective treatments for this debilitating disease.

From the Research

Treatment Options for Inclusion Body Myositis (IBM)

• There is no known effective treatment for reversing or minimizing the progression of IBM 2, 3, 4, 5, 6.
• Various treatment options have been attempted, including immunosuppressive and immunomodulating drugs, anabolic steroids, and antioxidant treatments 2, 6.
• Trials of methotrexate (MTX), intravenous immunoglobulin, interferon beta-1a, and MTX have provided low-quality to high-quality evidence of having no effect on the progression of IBM 2, 3.
• Other treatments, such as oxandrolone, azathioprine, bimagrumab, arimoclomol, and sirolimus, have also been studied, but the evidence is limited and inconclusive 2, 3.
• Current therapeutic attempts aim to block the myostatin pathway or restore protein homeostasis 4.
• Newer therapies, such as anti-T-lymphocyte immunoglobulin combined with MTX, may be promising, but further investigation is needed to document efficacy 2.

Challenges in Treating IBM

• IBM is a slowly progressive disease, making it difficult to assess treatment efficacy due to the need for longer-duration trials 2, 6.
• The disease is often refractory to immunotherapy, and corticosteroids have not been shown to be efficacious 6.
• There is a need for more randomized controlled trials that are larger, of longer duration, and use fully validated, standardized, and responsive outcome measures 2, 3.