From the Guidelines
Currently, there is no effective treatment that can cure or stop the progression of inclusion body myositis (IBM). Management focuses on supportive care and symptom relief, with physical therapy and occupational therapy being the mainstays of treatment, helping to maintain muscle strength and function for as long as possible 1.
Key Aspects of Treatment
- Regular exercise, particularly supervised strength training and aerobic exercise, may help slow muscle deterioration.
- Assistive devices such as braces, canes, walkers, or wheelchairs may be necessary as the disease progresses.
- The Inclusion Body Myositis Functional Rating Scale is a validated 10-point disease-specific functional scale used to assess specific tasks, including swallowing, handwriting, and walking 1.
Medications and Therapies
- Various medications have been tried, including immunosuppressants like prednisone, methotrexate, and intravenous immunoglobulin (IVIG), but they generally show limited or no benefit for most patients with IBM.
- Some patients with swallowing difficulties may require dietary modifications or, in severe cases, procedures like cricopharyngeal myotomy to improve swallowing function.
Disease Mechanism and Research
- IBM is believed to involve both inflammatory and degenerative processes in muscle tissue, which may explain why traditional immunosuppressive therapies have limited effectiveness 1.
- Research continues to explore potential treatments targeting the underlying mechanisms of the disease, including the use of gene expression profiling of peripheral blood cells and muscle tissue to identify immune “fingerprints” that may be useful in monitoring disease activity and treatment response 1.
From the Research
Treatment Options for Inclusion Body Myositis
- Various studies have investigated the efficacy of different treatments for inclusion body myositis (IBM), including immunosuppressive and immunomodulatory agents 2, 3, 4, 5, 6.
- A retrospective review and prospective trial of immunosuppressive therapy found that prednisone and other immunosuppressive therapies were of modest benefit in about half of patients with IBM, especially those with some evidence of active inflammation 2.
- However, a systematic review of randomized controlled trials found that treatments including methotrexate, intravenous immunoglobulin, and other immunosuppressive agents had low-quality to high-quality evidence of having no effect on the progression of IBM 3.
- Other studies have suggested that therapies such as beta-interferon and synthetic anabolic hormones may be promising, but further investigation is needed to document efficacy 4, 6.
- Currently, there is no established effective treatment for IBM, and the disease remains refractory to treatment 5, 6.
Challenges in Treating Inclusion Body Myositis
- The disease pathogenesis of IBM is poorly understood, involving an interplay between inflammatory and degenerative pathways 5.
- The slow progression of the disease makes it difficult to assess treatment efficacy, requiring longer-duration trials to determine treatment effects 6.
- The lack of standardized outcome measures across trials has led to inconsistency in outcome measures, making it challenging to compare results and draw conclusions 3.