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PubMed This is a summary of 18 peer-reviewed journal articles Updated
Rheumatology

Building Your Care Team and Living Well with EGPA

At a Glance

Living well with EGPA requires a multidisciplinary care team, usually led by a rheumatologist. Long-term survivorship focuses on using steroid-sparing treatments, protecting overall health through diet and exercise, and regularly monitoring eosinophil counts for signs of relapse.

Managing a chronic, multisystem disease like EGPA requires more than just one doctor; it requires a coordinated team of experts. While the journey can be complex, the outlook for survivors is brighter than ever, with patients regularly managing their disease effectively and living full lives for decades [1][2].

Building Your Multidisciplinary Team

Because EGPA can affect your lungs, heart, nerves, and sinuses simultaneously, you will likely need to see several specialists.

  • Rheumatologist: Typically the “quarterback” of your team, managing the systemic immune response and coordinating immunosuppressive treatments [2][3].
  • Pulmonologist: Focuses on managing the severe asthma and lung inflammation [4][5].
  • Cardiologist: Essential for baseline screening and long-term monitoring of the heart muscle [6][7].
  • Neurologist: Helps manage nerve pain or weakness and monitors for neurological changes [8][9].
  • Otolaryngologist (ENT): Manages chronic sinusitis and nasal polyps [3][10].

Navigating Long-Term Survivorship

As an EGPA survivor, your care will shift from “putting out the fire” of active vasculitis to managing long-term health and quality of life.

Managing the Steroid Burden

For many years, oral corticosteroids (like Prednisone) were the only option for EGPA. While they save lives, long-term use can lead to bone density loss, weight gain, and diabetes [11][12]. Modern care focuses on “steroid-sparing” strategies—using biologics or other immune modulators to help you reach the lowest possible steroid dose while staying in remission [13][14].

Daily Management and Lifestyle

Living well with EGPA means taking active steps to protect your overall health:

  • Infection Prevention: Because your treatments suppress your immune system, it is vital to stay up-to-date on non-live vaccinations (like flu, pneumonia, and COVID-19). You should consult your doctor before receiving any live vaccines [15][13].
  • Diet and Bone Health: To counteract the effects of steroids, focus on a diet rich in calcium and vitamin D. Your doctor may also recommend specific supplements or medications to protect your bone density [11][12].
  • Exercise: Regular, moderate exercise helps maintain cardiovascular health and combats steroid-induced muscle weakness. Always clear an exercise plan with your cardiologist first to ensure your heart is protected [7][11].

Monitoring for Relapse and “Scan Anxiety”

Relapses can occur even after years of remission. Regular monitoring is your best defense, including frequent checks of your eosinophil counts and periodic heart imaging [16][17]. It is entirely normal to feel anxious before appointments or when awaiting test results (sometimes called “scan anxiety”). Integrating mental health support and connecting with patient advocacy groups can be just as important as your physical medical care in maintaining a high quality of life [18][12].

Common questions in this guide

Which doctors do I need on my EGPA care team?
Because EGPA affects multiple body systems, your team is typically led by a rheumatologist and should include a pulmonologist for asthma, a cardiologist for heart health, a neurologist for nerve issues, and an ENT for sinus management.
Why do doctors want to lower my corticosteroid dose?
While corticosteroids like Prednisone are life-saving during active disease, long-term use can cause bone density loss, weight gain, and diabetes. Doctors now use steroid-sparing medications to help maintain remission while keeping your steroid dose as low as possible.
Are vaccines safe to get while being treated for EGPA?
Since EGPA treatments suppress your immune system, getting non-live vaccines for the flu, pneumonia, and COVID-19 is vital to prevent infections. Always check with your doctor before receiving any live vaccines.
How will my doctors check for an EGPA relapse?
Even after years of remission, EGPA can flare up again. Your care team will continuously monitor your health by checking your eosinophil counts and ANCA status through blood work, as well as performing periodic heart imaging.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many other EGPA patients do you currently treat in your practice?
  2. 2.Do you have a preferred cardiologist and neurologist who are familiar with the specific ways EGPA affects the heart and nerves?
  3. 3.What is our long-term plan for reducing my corticosteroid (Prednisone) dose while keeping my disease in remission?
  4. 4.How often will we monitor my eosinophil count and ANCA status to check for a potential relapse?
  5. 5.Which vaccines are safe for me to receive right now, and which should I avoid?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (18)
  1. 1

    Improved long-term prognosis of eosinophilic granulomatosis with polyangiitis: retrospective analysis of 87 patients after biologic therapy introduction in Japan.

    Yamashita Y, Masumoto N, Takaoka S, et al.

    Scientific reports 2026; (16(1)).

    PMID: 41723230
  2. 2

    Primary care physicians play a crucial role in diagnosing and managing rare eosinophilic diseases: HES and EGPA.

    Shum M, Gewurz-Singer O, Silver J, Akuthota P

    Frontiers in medicine 2025; (12()):1568770 doi:10.3389/fmed.2025.1568770.

    PMID: 40630493
  3. 3

    The role of surgery in antineutrophil cytoplasmic antibody-associated vasculitides affecting the nose and sinuses: A systematic review.

    Pendolino AL, Unadkat S, Zhang H, et al.

    SAGE open medicine 2020; (8()):2050312120936731 doi:10.1177/2050312120936731.

    PMID: 32676189
  4. 4

    When inflammation is not just inflammation-A review of systemic diseases of the nose and sinuses part 2: Granulomatosis with polyangiitis and eosinophilic granulomatosis with polyangiitis.

    Cler SJ, Ogden MA, Farrell NF, et al.

    American journal of otolaryngology 2024; (45(3)):104207 doi:10.1016/j.amjoto.2023.104207.

    PMID: 38176206
  5. 5

    Clinical, Biomarker, and Radiological Progression from Asthma to Systemic Eosinophilic Granulomatosis with Polyangiitis: A Retrospective Cohort Study.

    Lu C, Ou C, Deng Y, et al.

    Journal of asthma and allergy 2025; (18()):1615-1626 doi:10.2147/JAA.S542255.

    PMID: 41244373
  6. 6

    Cardiac Involvement in Eosinophilic Granulomatosis with Polyangiitis.

    Srikantharajah M, Gopalan D, Wilson-Morkeh H, et al.

    Current cardiology reports 2025; (27(1)):109.

    PMID: 40632386
  7. 7

    Case Report: An Unusual Presentation of Cardiovascular Involvement in Eosinophilic Granulomatosis With Polyangiitis.

    Li Y, Zhou H, Zhou Y, Tang H

    Frontiers in cardiovascular medicine 2022; (9()):928192 doi:10.3389/fcvm.2022.928192.

    PMID: 35837613
  8. 8

    A Rare Presentation of Bilateral Foot Drop in Anti-neutrophil Cytoplasmic Antibody (ANCA)-Negative Eosinophilic Granulomatosis With Polyangiitis (Churg-Strauss Syndrome): A Diagnostic Challenge.

    Isar MM, Al-Banna M, Hulo MG, et al.

    Cureus 2025; (17(6)):e86765 doi:10.7759/cureus.86765.

    PMID: 40718238
  9. 9

    Unraveling cerebrovascular involvement in EGPA through digital subtraction angiography: case presentation and systematic literature review.

    Vasandani V, O'Leary S, Gandhi R, et al.

    BMC rheumatology 2025; (9(1)):80 doi:10.1186/s41927-025-00518-7.

    PMID: 40597425
  10. 10

    Otologic Manifestations of Eosinophilic Granulomatosis With Polyangiitis: A Systematic Review.

    Ashman PE, Chen T, Barinsky GL, et al.

    Otology & neurotology : official publication of the American Otological Society, American Neurotology Society [and] European Academy of Otology and Neurotology 2021; (42(4)):e380-e387 doi:10.1097/MAO.0000000000003024.

    PMID: 33534386
  11. 11

    Prevalence, incidence and healthcare burden of eosinophilic granulomatosis with polyangiitis in the UK.

    Hwee J, Harper L, Fu Q, et al.

    ERJ open research 2024; (10(3)) doi:10.1183/23120541.00430-2023.

    PMID: 38746859
  12. 12

    Retrospective Analysis of the Burden of Illness of Eosinophilic Granulomatosis With Polyangiitis (EGPA) Versus Asthma in Commercially Insured US Patients.

    Bell CF, Ajmera M, Meyers J

    Cureus 2023; (15(7)):e42241 doi:10.7759/cureus.42241.

    PMID: 37605658
  13. 13

    Real-world safety and effectiveness of mepolizumab for patients with eosinophilic granulomatosis with polyangiitis in Japan: Long-term observation of the MARS study.

    Ishii T, Kunishige H, Kobayashi T, et al.

    Modern rheumatology 2025; (35(3)):505-515 doi:10.1093/mr/roae100.

    PMID: 39508562
  14. 14

    Real-world safety and effectiveness of mepolizumab for patients with eosinophilic granulomatosis with polyangiitis in Japan: A subgroup analysis of the MARS study.

    Ishii T, Kunishige H, Yoshida M, et al.

    Modern rheumatology 2026; (36(2)):272-281 doi:10.1093/mr/roaf096.

    PMID: 41092276
  15. 15

    Granulomatosis with polyangiitis (Wegener's).

    Puéchal X

    Joint bone spine 2020; (87(6)):572-578 doi:10.1016/j.jbspin.2020.06.005.

    PMID: 32562697
  16. 16

    Immunological Markers Associated with Skin Manifestations of EGPA.

    Brunetto S, Buta F, Gangemi S, Ricciardi L

    International journal of molecular sciences 2025; (26(15)) doi:10.3390/ijms26157472.

    PMID: 40806600
  17. 17

    The hypereosinophilia dilemma: what's beyond cardiac involvement?

    Ivănescu AC, Badea GC, Dan GA

    Romanian journal of internal medicine = Revue roumaine de medecine interne 2025; (63(4)):316-322 doi:10.2478/rjim-2025-0018.

    PMID: 40968519
  18. 18

    Utility of the Brief Illness Perception Questionnaire to Monitor Patient Beliefs in Systemic Vasculitis.

    Schwartz MN, Rimland CA, Quinn KA, et al.

    The Journal of rheumatology 2020; (47(12)):1785-1792 doi:10.3899/jrheum.190828.

    PMID: 32238516

This page provides educational information on building a care team and living well with EGPA. It is not a substitute for professional medical advice; always consult your specialists regarding treatment, diet, and exercise plans.

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