Living with Schnitzler syndrome
A rare condition of body-wide inflammation with hives, repeated fevers, and joint and bone pain, starting in adulthood.
Understanding Schnitzler syndrome
Signs vary but may include hives (urticaria), repeated fevers, joint pain and inflammation, enlarged organs, and blood differences. It starts in adulthood. GARD says the exact cause is unknown and most cases happen with no family history.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hives (urticaria)
- Fever
- Joint pain and arthritis
- Bone pain
- Enlarged liver and spleen
- Anemia and tiredness
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 The International Foundation for Autoimmune & Autoinflammatory Arthritis
- 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. Most cases occur with no family history.
Also known as: chronic urticaria with gammopathy; chronic urticaria with macroglobulinemia
Patient organizations
- The International Foundation for Autoimmune & Autoinflammatory ArthritisSchnitzler syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Schnitzler syndrome.
Explore research for Schnitzler syndrome
Explore actively recruiting Schnitzler syndrome studies with HealthSpark.
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- 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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