Living with Antisynthetase syndrome
A long-term autoimmune condition affecting the muscles, joints, and lungs, among other parts of the body.
Understanding Antisynthetase syndrome
Signs can include muscle inflammation (myositis), swollen joints (polyarthritis), lung disease (interstitial lung disease), thick, cracked skin on the hands, and Raynaud phenomenon. It usually shows up in adults and older adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Muscle inflammation (myositis)
- Muscle weakness and aches
- Joint pain and arthritis
- Lung scarring (pulmonary fibrosis) and trouble breathing
- Raynaud phenomenon
- Dry eyes and dry mouth
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, brain and nervous system specialists and lung and breathing 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, Myositis Support and Understanding and The Myositis 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); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Autoimmune Association, Myositis Support and Understanding, The Myositis 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
GARD says the exact cause is unknown. Antibodies that attack enzymes called aminoacyl-tRNA synthetases appear to be linked, and they may arise after viral infections or in people with a genetic predisposition.
Also known as: anti-jo1 syndrome; as syndrome
Patient organizations
- Autoimmune AssociationAntisynthetase syndrome · United States
- Myositis Support and UnderstandingAntisynthetase syndrome · United States
- The Myositis AssociationAntisynthetase syndrome · United States
- Arthritis FoundationAntisynthetase syndrome · United States
- The International Foundation for Autoimmune & Autoinflammatory ArthritisAntisynthetase syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Antisynthetase syndrome.
Explore research for Antisynthetase syndrome
Explore actively recruiting Antisynthetase syndrome studies with HealthSpark.
Find actively recruiting studies for Antisynthetase syndrome 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Antisynthetase syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Antisynthetase syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Antisynthetase syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.