Preparing for Your Autoinflammatory Disease Visit

Bring a short timeline

• When did symptoms begin? How long do episodes last, and how often do they return?
• What happens with the fever: rash, pain, mouth ulcers, eye symptoms, bowel symptoms or other changes?
• How do you feel between episodes?
• What has changed in school, work, sleep, growth or daily activity?

Note how temperature was measured. Bring dated photographs of symptoms that disappear before appointments. Share them through your clinic’s approved system, not public comments.

Gather the essentials

• A current medication list, including nonprescription medicines and supplements.
• Relevant laboratory, imaging and genetic reports—not just a remembered “positive” or “negative.”
• Previous diagnoses, treatments tried, benefits and side effects.
• Family history of similar symptoms, known diagnoses or unexplained kidney disease.
• Your three most important questions.

Use a diary that fits the purpose

The AIDAI diary guide explains a validated symptom tool used in FMF, MKD, TRAPS and CAPS. It is not a diagnostic test. If you do not have one of those diagnoses, a simple dated record may still help; ask your clinician what to track and how to interpret it. Do not calculate a disease label from a score.

If the diagnosis is still uncertain

Ask what is known, what remains uncertain, and what the follow-up plan is. A genetic variant of uncertain significance is not itself a diagnosis. A negative result does not answer every question. The genetics guide explains these distinctions.

Before leaving, clarify who will review test results, how you will receive them, when to return, and what changes should prompt earlier contact.

A short question list to print

1. What explanations are you considering?
2. What would the proposed tests change?
3. What is our treatment or observation goal?
4. What should I do during the next episode?
5. What should I do if symptoms are different or more severe?

Use your browser’s print option to keep this checklist. Do not postpone urgent care to complete a diary or wait for a specialist visit.