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.
Living with Inclusion Body Myositis: Patient / Family Resources
Exercise and Physical Therapy
For individuals with IBM, exercise is not just beneficial; it is currently considered the most important component of treatment . A regular, carefully planned exercise program can help reduce inflammation, combat fatigue, and preserve muscle strength and function for as long as possible. It is crucial to work with a healthcare professional to develop a safe and effective plan.
| Resource Type | Description | Link/Source |
|---|---|---|
| Finding a Therapist | The Myositis Association provides a directory to help you find physical therapists with experience in treating myositis. | TMA Find a Physical Therapist |
| Home Exercise Programs | The Myositis Association offers presentations and videos for home exercise programs specifically designed for IBM patients. | TMA Exercise Resources |
| Aquatic Therapy | Water-based exercise can be an excellent low-impact option for maintaining mobility and strength. | TMA Aquatic Therapy Presentation |
Occupational Therapy and Daily Living
Occupational therapy (OT) plays a vital role in helping patients adapt to the challenges of IBM, focusing on modifying tasks and environments to conserve energy, reduce strain, and maintain independence in activities of daily living. The core principle is to “modify and use, not use and abuse”.
Key strategies include:
•Energy Conservation: Pacing activities, taking regular rest breaks, and sitting while performing tasks like cooking can significantly reduce fatigue.
•Home Modifications: Simple changes like keeping frequently used items within easy reach, reducing clutter, and using grab bars in the bathroom can enhance safety and independence.
•Adaptive Equipment: A wide range of tools can make daily tasks easier. Examples include long handled shoehorns, button hooks, and specialized kitchen utensils with built-up handles for easier grip.
Assistive Devices and Mobility Aids
As IBM progresses, assistive devices become essential for maintaining mobility and safety. The need for these devices typically follows a progression as muscle weakness increases.
| Device Category | Examples | Key Considerations |
|---|---|---|
| Walking Aids | Canes, walkers, and rollators (rolling walkers) | Provide support and stability, reducing the risk of falls. |
| Seating & Lifting | Seat lift assists, lift-style recliners, raised toilet seats | Help with the difficulty of rising from a seated position. |
| Stair Navigation | Stair glides and lifts | Provide a safe way to move between floors in the home. |
| Mobility Scooters | Electric scooters | Useful for conserving energy and traveling longer distances. |
| Wheelchairs | Manual and power wheelchairs | Necessary for individuals who can no longer walk safely. Medicare now covers seat elevation features in power wheelchairs. |
Speech and Swallowing Therapy
Difficulty swallowing, or dysphagia, is a common and serious complication of IBM that can lead to choking and aspiration pneumonia. It is crucial to have swallowing function evaluated by a speech-language pathologist, who can recommend strategies to improve safety, such as dietary modifications and specific swallowing techniques.
Support Groups and Community
Connecting with others who understand the experience of living with IBM is invaluable. Several organizations offer robust support networks, community forums, and educational events.
•The Myositis Association (TMA): Offers a wide range of support services, including local and online groups, a private community forum, and resources for patients and caregivers. Find a TMA Support Group.
•Myositis Support and Understanding (MSU): A patient-led organization providing online support groups, video sessions, and educational materials. Visit MSU.
Financial Assistance and Insurance
The financial burden of managing a chronic illness can be significant. Several programs are available to help with costs related to medication, medical equipment, and daily living.
•Financial Assistance Programs: Organizations like MSU offer grants to help with medical bills and mobility devices .
•Disability Benefits: IBM is a condition that can qualify individuals for Social Security Disability benefits.
•Insurance Coverage: Medicare and other insurance plans may cover durable medical equipment (DME) and assistive devices with a doctor’s prescription. It is important to check with your specific plan for coverage details.
Clinical Trials and Research
Participation in research is a powerful way for patients to contribute to the search for effective treatments and a cure for IBM. Numerous clinical trials and research studies are underway.
•Finding Trials: Resources like ClinicalTrials.gov, The Myositis Association’s Clinical Trials page, and CureIBM.org provide up-to-date listings of ongoing studies.
Educational Resources
Finding Healthcare Providers
Given the rarity of IBM, finding healthcare providers with expertise in the disease is essential. The Johns Hopkins Myositis Center is a world-renowned center for the diagnosis and treatment of myositis. If travel is difficult for you, you can also find local specialists through the TMA Find a Doctor directory.
Caregiver Resources
Caring for someone with IBM can be demanding. Resources are available to support caregivers, providing education, community, and practical advice. Both The Myositis Association and the Muscular Dystrophy Association (MDA) offer dedicated resources for care partners.
