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PubMed This is a summary of 17 peer-reviewed journal articles Updated
Rheumatology · Adult-onset Still's Disease

Building Your Care Team and First Visit Prep

At a Glance

When seeking care for Adult-onset Still's Disease (AOSD), building a specialized team led by a rheumatologist is crucial. Prepare for your first visit by bringing a complete history of lab results, biopsies, imaging, and a detailed fever log to help doctors confirm this complex diagnosis.

Because Adult-onset Still’s Disease (AOSD) is a rare and complex condition, your medical care requires a “captain” and a specialized “crew.” Your primary goal during your first few visits is to ensure that your care team has the specific expertise needed to manage a systemic autoinflammatory disorder and that they have all the evidence required to confirm your diagnosis [1][2].

Your Care Team “Crew”

While a Rheumatologist is the primary captain of your team, the systemic nature of AOSD often requires input from other specialists to monitor for complications or rule out mimics [1][3].

  • Rheumatologist: The lead specialist who manages your immunosuppressive and biological treatments. Ideally, they should have a sub-specialization or interest in autoinflammatory diseases [2][3].
  • Hematologist: Often involved during the diagnostic phase to perform bone marrow biopsies and rule out blood cancers (like lymphoma). They also play a critical role if you develop Macrophage Activation Syndrome (MAS) [4][5].
  • Dermatologist: May be needed to biopsy the AOSD rash, especially if it presents atypically, to distinguish it from other skin conditions [6].
  • Cardiologist: Necessary if the inflammation affects the heart (myocarditis) or the lining around the heart (pericarditis) [7][8].

Preparing Your “Evidence Folder”

AOSD is a diagnosis of exclusion, meaning the doctor must see proof that other conditions have been ruled out [9][10]. Do not rely on hospitals to transfer records; bring a physical or digital folder containing the following:

  1. Laboratory History: A complete timeline of your ferritin levels, white blood cell counts, and liver enzymes (AST/ALT) from the very beginning of your symptoms [11][12].
  2. Biopsy Reports: If you had a lymph node or bone marrow biopsy, the full pathology report is essential to confirm that no malignancy (cancer) was found [13][14].
  3. Imaging Discs: Bring the actual images (on a CD or flash drive) and the reports for any PET/CT scans, MRIs, or CT scans you have had [13][15].
  4. Fever Log: A simple calendar showing when your fevers occurred and what your peak temperature was each day [16].

Vetting Your Specialist

Since AOSD is rare, it is okay to “interview” your doctor to ensure they are the right fit. The 2024 international consensus guidelines emphasize that expert centers are vital for managing difficult-to-treat cases [1].

If your local rheumatologist hasn’t treated many AOSD patients, ask if they are willing to consult with an expert center or participate in research networks like the Autoinflammatory Diseases Alliance (AIDA) [1][17]. A great doctor is one who recognizes the rarity of your condition and is willing to collaborate with international experts to give you the best care.

Common questions in this guide

What type of doctor treats Adult-onset Still's Disease?
A rheumatologist typically acts as the lead doctor for managing AOSD and prescribing biological treatments. Because AOSD can affect the whole body, your care team may also include a hematologist, dermatologist, and cardiologist.
What should I bring to my first doctor appointment for AOSD?
You should bring a comprehensive digital or physical folder of your medical history. This must include your lab results focusing on ferritin levels, pathology reports from any biopsies, imaging discs with their reports, and a daily calendar tracking your fevers.
Why do I need to see a hematologist for AOSD?
A hematologist is often involved early on to perform biopsies that rule out blood cancers like lymphoma, since AOSD is a diagnosis of exclusion. They are also vital if you develop a severe complication known as Macrophage Activation Syndrome (MAS).
How do I know if my doctor is qualified to treat my AOSD?
Since AOSD is rare, ask your doctor how many cases they have managed recently and if they use specific classification criteria like Yamaguchi or Fautrel. You should also ask if they collaborate with expert centers or participate in autoinflammatory disease networks.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with Adult-onset Still’s Disease or similar systemic autoinflammatory disorders have you treated in the last year?
  2. 2.Which specific classification criteria (like Yamaguchi or Fautrel) do you use to monitor my disease activity?
  3. 3.Are you comfortable managing biological therapies like IL-1 or IL-6 inhibitors, and what is your protocol for switching them if I don't respond?
  4. 4.Do you have a direct line of communication with an 'expert center' for AOSD if my case becomes difficult to manage?
  5. 5.What is our plan for coordinating with other specialists (like a cardiologist or hematologist) if complications arise?

Questions For You

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References

References (17)
  1. 1

    EULAR/PReS recommendations for the diagnosis and management of Still's disease, comprising systemic juvenile idiopathic arthritis and adult-onset Still's disease.

    Fautrel B, Mitrovic S, De Matteis A, et al.

    Annals of the rheumatic diseases 2024; (83(12)):1614-1627 doi:10.1136/ard-2024-225851.

    PMID: 39317417
  2. 2

    Monogenic Autoinflammatory Diseases: State of the Art and Future Perspectives.

    Di Donato G, d'Angelo DM, Breda L, Chiarelli F

    International journal of molecular sciences 2021; (22(12)) doi:10.3390/ijms22126360.

    PMID: 34198614
  3. 3

    Monogenic autoinflammatory diseases in children: single center experience with clinical, genetic, and imaging review.

    Alsharief AN, Laxer RM, Wang Q, et al.

    Insights into imaging 2020; (11(1)):87 doi:10.1186/s13244-020-00889-0.

    PMID: 32737687
  4. 4

    Tofacitinib-induced remission in refractory adult-onset Still's disease complicated by macrophage activation syndrome.

    Honda M, Moriyama M, Kondo M, et al.

    Scandinavian journal of rheumatology 2020; (49(4)):336-338 doi:10.1080/03009742.2020.1729405.

    PMID: 32329389
  5. 5

    Hemophagocytic lymphohistiocytosis accompanying Still's disease: A case report.

    Ahmadzadeh A, Babadi N, Farsad F, et al.

    Clinical case reports 2023; (11(10)):e7955 doi:10.1002/ccr3.7955.

    PMID: 37830072
  6. 6

    Oral mucosa lesions as atypical manifestation of adult-onset Still´s disease.

    Brance ML, Neffen EL

    Anais brasileiros de dermatologia 2018; (93(2)):271-273 doi:10.1590/abd1806-4841.20186836.

    PMID: 29723378
  7. 7

    Recent advances and evolving concepts in Still's disease.

    Ruscitti P, Cantarini L, Nigrovic PA, et al.

    Nature reviews. Rheumatology 2024; (20(2)):116-132 doi:10.1038/s41584-023-01065-6.

    PMID: 38212542
  8. 8

    Flagellate dermatitis: An atypical skin finding in adult-onset Still's disease.

    Toujani S, El Ouni A, Belhassen A, Bouslama K

    Clinical case reports 2022; (10(10)):e6488 doi:10.1002/ccr3.6488.

    PMID: 36285036
  9. 9

    Beyond the Norm: A Unique Case of Adult-Onset Still's Disease.

    Attia B, Ismail MS, El-Ghobashy N, et al.

    Cureus 2024; (16(8)):e68104 doi:10.7759/cureus.68104.

    PMID: 39347148
  10. 10

    Still's Disease Onset in Older Adults: Clinical Features, Diagnosis, and Management.

    Tada Y, Maruyama A, Shirahama Y

    Drugs & aging 2024; (41(9)):713-724 doi:10.1007/s40266-024-01137-6.

    PMID: 39097535
  11. 11

    Adult-Onset Still's Disease: A Case Report.

    Shad I, Shafique M, Waris SA, et al.

    Cureus 2022; (14(1)):e21033 doi:10.7759/cureus.21033.

    PMID: 35155001
  12. 12

    Risk of macrophage activation syndrome in patients with adult-onset Still's disease with skin involvement: A retrospective cohort study.

    Ding Y, Tang S, Li S, et al.

    Journal of the American Academy of Dermatology 2021; (85(6)):1503-1509 doi:10.1016/j.jaad.2021.02.005.

    PMID: 33556412
  13. 13

    Utilization of PET in diagnosing adult-onset Still's disease: a systematic review.

    Cajamarca-Baron J, Castañeda-Gonzalez JP, Acelas-Gonzalez GE, et al.

    Nuclear medicine communications 2025; (46(11)):1020-1028 doi:10.1097/MNM.0000000000002039.

    PMID: 40838726
  14. 14

    [18F]FDG-PET/CT Demonstration of Young Adult Onset Stills Disease Mimicking Lymphoma.

    Nawwar AA, Searle J, Hodby K, et al.

    BJR case reports 2022; (8(3)):20210195 doi:10.1259/bjrcr.20210195.

    PMID: 36101734
  15. 15

    The role of 18F-fluorodeoxyglucose positron emission tomography in the assessment of disease activity of adult-onset Still's disease.

    An YS, Suh CH, Jung JY, et al.

    The Korean journal of internal medicine 2017; (32(6)):1082-1089 doi:10.3904/kjim.2015.322.

    PMID: 27926812
  16. 16

    A comprehensive review on adult onset Still's disease.

    Giacomelli R, Ruscitti P, Shoenfeld Y

    Journal of autoimmunity 2018; (93()):24-36 doi:10.1016/j.jaut.2018.07.018.

    PMID: 30077425
  17. 17

    The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases.

    Gaggiano C, Vitale A, Tufan A, et al.

    Frontiers in medicine 2022; (9()):980679 doi:10.3389/fmed.2022.980679.

    PMID: 36160138

This page provides educational information on building a care team for Adult-onset Still's Disease. It is not a substitute for professional medical advice or a formal consultation with a qualified rheumatologist.

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