Living with Dermatomyositis
Information, shared experiences and research connections for people living with dermatomyositis and those who support them.
Understanding Dermatomyositis
Its exact cause isn't known; weakness may come on suddenly or build over weeks to months, and the course varies, with some people, especially children, seeing symptoms go away completely.
Signs & symptoms
Dermatomyositis affects both the skin and the muscles. Common signs include:
- A purple-red rash, often on the upper eyelids, face, neck or upper body
- Red bumps over the knuckles and other joints
- Weakness that makes it hard to climb stairs, stand up or raise your arms
- Muscle stiffness or soreness
- Trouble swallowing
- Shortness of breath or tiredness
Tell your care team about new or changing symptoms.
Diagnosis
- 1Exam and history
A clinician looks closely at the skin and checks muscle strength.
- 2Blood and other tests
Blood tests for muscle enzymes and immune markers, plus tests such as EMG, MRI, or lung and swallowing studies, may be used.
- 3Skin and muscle biopsy
A small piece of skin and muscle may be studied under a microscope to help confirm the diagnosis.
Care & treatment
- Monitoring
- Follow-up may include muscle strength checks, blood tests, and checks of the lungs and heart, plus cancer screening, since cancer can be linked to dermatomyositis.
- Treatment
- Care often starts with medicines that calm inflammation, which are lowered slowly over time, and other medicines that quiet the immune system may be added.
- Your plan
- People respond differently, so your care team may adjust the plan if symptoms continue or come back.
Discuss benefits, risks and follow-up with your care team.
Everyday life
Tracking changes over time can help you and your care team.
- Note when everyday tasks like climbing stairs, standing up or lifting your arms get harder or easier.
- Take dated photos of rash changes to share at visits.
- Ask your care team about protecting your skin from the sun, since skin can be sensitive to sunlight.
You are more than your diagnosis
Perspectives from people navigating life with Dermatomyositis.
Explore research for Dermatomyositis
Explore actively recruiting Dermatomyositis studies with HealthSpark.
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- Phase 3 studies first, with nearest research center
- Study information from ClinicalTrials.gov
- 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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