Living with Inclusion body myositis
A progressive muscle disease with inflammation and weakening of the legs, arms, fingers, and wrists, usually in older adults.
Understanding Inclusion body myositis
It is a type of inflammatory myopathy that usually starts in adults and older adults. Some people also have weak facial muscles, especially those that close the eyes, or trouble swallowing (dysphagia). Muscle cramping and pain are uncommon.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Growing weakness in the legs and arms
- Weak fingers and wrists
- Weak thigh (quadriceps) muscles
- Wasting of muscle (atrophy)
- Trouble swallowing
- Weak facial muscles
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists and brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Global Autoimmune Institute and Muscular Dystrophy Association may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Autoimmune Association, Global Autoimmune Institute, Muscular Dystrophy Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The cause is poorly understood and likely involves genes, the immune system, and the environment. Some people may have a genetic predisposition, but the condition itself typically is not inherited.
Also known as: ibm; ibm - inclusion body myositis; sibm; sporadic inclusion body myositis
Patient organizations
- Autoimmune AssociationInclusion body myositis · United States
- Global Autoimmune InstituteInclusion body myositis · United States
- Muscular Dystrophy AssociationInclusion body myositis · United States
- Myositis Support and UnderstandingInclusion body myositis · United States
- The Myositis AssociationInclusion body myositis · United States
- Cure IBMInclusion body myositis · United States
You are more than your diagnosis
Perspectives from people navigating life with Inclusion body myositis.
Explore research for Inclusion body myositis
Explore actively recruiting Inclusion body myositis studies with HealthSpark.
Find actively recruiting studies for Inclusion body myositis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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