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

Building Your Care Team and Long-Term Monitoring

At a Glance

Relapsing polychondritis needs coordinated, long-term follow-up because airway, heart, eye, ear, and other problems can develop quietly. A rheumatologist-led team uses symptoms, exams, and tailored testing to detect changes early and support remission.

Managing relapsing polychondritis (RP) is a marathon, not a sprint. Because the disease can affect so many different systems—from your ears to your heart—your care should not rest on the shoulders of just one doctor. Building a coordinated team and establishing an individualized “surveillance” (monitoring) schedule are the best ways to protect your long-term health and quality of life [1][2].

Building Your Multidisciplinary Team

A rheumatologist typically acts as the “quarterback” of your care team, coordinating treatments and managing your immune-suppressing medications. However, because RP can be “silent” in its early stages, you will likely need a group of specialists to watch over specific organs [1]:

  • Pulmonologist/Airway Specialist: Essential for monitoring your windpipe and lungs using specialized scans and breathing tests [3].
  • Cardiologist: Focuses on the health of your heart valves and your aorta (the body’s main artery) [4].
  • ENT (Otolaryngologist): Manages ear, nose, and throat symptoms, including hearing and balance issues [5].
  • Ophthalmologist: Monitors for eye inflammation (like scleritis), which can occur in nearly half of all RP patients [6].
  • Hematologist: If you have signs of VEXAS syndrome or related blood disorders, a blood specialist should be part of the team [7].

Your Long-Term Monitoring Schedule

In RP, your symptoms are often a more reliable guide than blood tests. While markers like CRP or ESR can show inflammation, they can sometimes be normal even when you are having a flare [8][9]. Doctors use the Relapsing Polychondritis Disease Activity Index (RPDAI)—a clinical scoring tool—to gauge how active the disease is, which complements your history and exams [10].

Your monitoring schedule will be individualized based on your risk and symptoms:

  1. Airway Screening: Baseline and repeat chest CTs and Pulmonary Function Tests (PFTs) will be decided by your team, balancing the need for data against cumulative radiation exposure [3][11].
  2. Heart Screening: Regular ECGs and echocardiograms may be recommended to check for silent valve leaks or aortic bulging [12][4].
  3. Vision and Hearing: Periodic exams are vital, as hearing loss and eye inflammation can progress quietly [5][6].

Understanding Prognosis and Survivorship

It is honest to acknowledge that RP carries risks. An older UK population study showed that people with RP had a mortality rate approximately twice that of the general population, with complications typically stemming from respiratory or heart issues [13]. However, outcomes vary substantially by organ involvement, treatment response, and access to specialist care [14].

Living with a relapsing disease often carries a psychological weight. “Scan anxiety”—the fear that a routine test will show new damage—and the fatigue of managing multiple appointments are real challenges [15]. Many patients find relief in being proactive:

  • Keep a Symptom Diary: Note the date, location, and severity of any new pain or redness.
  • The Medical Binder: Keep copies of your own CT scans, PFT reports, and a written difficult-airway plan to share with ER teams [16].
  • Seek Support: Rare disease communities can provide the “validation” that friends or family may not fully understand [17].

While RP is a long-term condition that may relapse or remain inactive, your team’s goal is to keep you in remission—a state where the disease is quiet and you can focus on living your life [18].

Common questions in this guide

Which doctors are usually involved in relapsing polychondritis care?
A rheumatologist often coordinates care and manages immune-suppressing medicines. Depending on your symptoms and organ risks, the team may also include a pulmonologist or airway specialist, cardiologist, ear-nose-throat doctor, ophthalmologist, and, when VEXAS syndrome or a related blood disorder is suspected, a hematologist.
What tests are used to monitor relapsing polychondritis over time?
Monitoring may include chest CT scans and pulmonary function tests for the airways and lungs, plus ECGs and echocardiograms for the heart and aorta. Periodic hearing and eye examinations may also be needed. The timing should be individualized according to symptoms, organ involvement, risk, and prior results.
Can my CRP or ESR be normal during an RP flare?
Yes. CRP and ESR can sometimes be normal even when relapsing polychondritis is active, so a normal result does not always rule out a flare. Doctors also consider your symptoms, physical examination, and tools such as the RPDAI when assessing disease activity.
What does the RPDAI score tell me?
The Relapsing Polychondritis Disease Activity Index, or RPDAI, is a clinical scoring tool used to estimate how active the disease is. It complements your symptom history and physical examination rather than replacing them. Ask your rheumatologist how your score relates to your current treatment and monitoring plan.
How can I prepare for an RP flare or emergency?
Keep a symptom diary and maintain a medical binder or digital folder with your CT scans, lung-function results, laboratory work, and written difficult-airway plan. Share the plan with your care team and emergency clinicians, and ask who to contact after hours if symptoms worsen.
What is the outlook for someone living with relapsing polychondritis?
The outlook varies widely with the organs involved, response to treatment, and access to specialist care. Relapsing polychondritis can relapse or remain inactive, and the care team's goal is to keep the disease in remission while watching for breathing or heart complications.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Which specific specialists (like a pulmonologist or cardiologist) should be part of my core team based on my symptoms?
  2. 2.How often will we repeat my airway scans (dynamic CT) and lung function tests if my breathing stays stable?
  3. 3.What is my current RPDAI score, and how does it complement my exam and symptom history to track my disease?
  4. 4.Can we review my most recent echocardiogram and ECG to see if there are any changes in my heart valves or aorta?
  5. 5.If I experience a flare on a weekend or after hours, who is the best person on my team to call first?

Questions For You

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References

References (18)
  1. 1

    Diagnostic Challenges and Management of Relapsing Polychondritis with Large-Airway Involvement: A Case Series and Literature Review.

    Kuo IC, Hsieh CI, Lee YC, et al.

    Life (Basel, Switzerland) 2024; (14(9)) doi:10.3390/life14091194.

    PMID: 39337976
  2. 2

    French practical guidelines for the diagnosis and management of relapsing polychondritis.

    Arnaud L, Costedoat-Chalumeau N, Mathian A, et al.

    La Revue de medecine interne 2023; (44(6)):282-294 doi:10.1016/j.revmed.2023.05.005.

    PMID: 37236870
  3. 3

    Tracheobronchial involvement of relapsing polychondritis.

    de Montmollin N, Dusser D, Lorut C, et al.

    Autoimmunity reviews 2019; (18(9)):102353 doi:10.1016/j.autrev.2019.102353.

    PMID: 31323366
  4. 4

    Aortic involvement in relapsing polychondritis: case-based review.

    Erdogan M, Esatoglu SN, Hatemi G, Hamuryudan V

    Rheumatology international 2021; (41(4)):827-837 doi:10.1007/s00296-019-04468-5.

    PMID: 31768631
  5. 5

    Evaluation of Semicircular Canal Function Using the Video Head Impulse Test in a Case of Relapsing Polychondritis and Otitis Media With Effusion.

    Fujiwara K, Morita S, Takeda H, Homma A

    Cureus 2025; (17(9)):e92184 doi:10.7759/cureus.92184.

    PMID: 41089099
  6. 6

    The ocular manifestations of relapsing polychondritis.

    Gallagher K, Al-Janabi A, Wang A

    International ophthalmology 2023; (43(8)):2633-2641 doi:10.1007/s10792-023-02662-w.

    PMID: 36856986
  7. 7

    Somatic Mutations in UBA1 Define a Distinct Subset of Relapsing Polychondritis Patients With VEXAS.

    Ferrada MA, Sikora KA, Luo Y, et al.

    Arthritis & rheumatology (Hoboken, N.J.) 2021; (73(10)):1886-1895 doi:10.1002/art.41743.

    PMID: 33779074
  8. 8

    Development and validation of diagnostic and activity-assessing models for relapsing polychondritis based on laboratory parameters.

    Liu Y, Cheng L, Zhao M, et al.

    Frontiers in immunology 2023; (14()):1274677 doi:10.3389/fimmu.2023.1274677.

    PMID: 37854592
  9. 9

    Three new inflammatory markers C reactive protein to albumin ratio, neutrophil to lymphocyte ratio, and platelet to lymphocyte ratio correlated with relapsing polychondritis disease activity index.

    Cao X, Zhao M, Li H, et al.

    Clinical rheumatology 2021; (40(11)):4685-4691 doi:10.1007/s10067-021-05827-z.

    PMID: 34160712
  10. 10

    What are risk factors for relapse in relapsing polychondritis? A retrospective study.

    Zhang N, Liu S, Liu Y, et al.

    Clinical rheumatology 2026; (45(2)):1155-1164 doi:10.1007/s10067-025-07831-z.

    PMID: 41413312
  11. 11

    Laryngeal involvement in relapsing polychondritis: clinical and CT findings in 173 patients.

    Bai X, Yu R, Wang Z

    RMD open 2025; (11(2)) doi:10.1136/rmdopen-2024-005397.

    PMID: 40345708
  12. 12

    Relapsing polychondritis: focus on cardiac involvement.

    Yin R, Zhao M, Xu D, et al.

    Frontiers in immunology 2023; (14()):1218475 doi:10.3389/fimmu.2023.1218475.

    PMID: 37771578
  13. 13

    Incidence and mortality of relapsing polychondritis in the UK: a population-based cohort study.

    Hazra N, Dregan A, Charlton J, et al.

    Rheumatology (Oxford, England) 2015; (54(12)):2181-7 doi:10.1093/rheumatology/kev240.

    PMID: 26187053
  14. 14

    Relapsing Polychondritis Can Be Characterized by Three Different Clinical Phenotypes: Analysis of a Recent Series of 142 Patients.

    Dion J, Costedoat-Chalumeau N, Sène D, et al.

    Arthritis & rheumatology (Hoboken, N.J.) 2016; (68(12)):2992-3001 doi:10.1002/art.39790.

    PMID: 27331771
  15. 15

    Discordance in patient and physician global assessment in relapsing polychondritis.

    Rose E, Ferrada MA, Quinn KA, et al.

    Rheumatology (Oxford, England) 2022; (61(5)):2025-2033 doi:10.1093/rheumatology/keab587.

    PMID: 34559216
  16. 16

    Patient Perception of Disease-Related Symptoms and Complications in Relapsing Polychondritis.

    Ferrada MA, Grayson PC, Banerjee S, et al.

    Arthritis care & research 2018; (70(8)):1124-1131 doi:10.1002/acr.23492.

    PMID: 29245173
  17. 17

    Identifying quality of life domains and facets affected in relapsing polychondritis: a qualitative analysis for the development of a disease-specific health-related quality of life instrument.

    Mertz P, Sander O, Faria R, et al.

    Orphanet journal of rare diseases 2026; (21(1)).

    PMID: 41808205
  18. 18

    A multicenter study of long-term outcomes of relapsing polychondritis in Iran.

    Jafarpour M, Saberivand M, Saemi M, et al.

    Scientific reports 2024; (14(1)):16486 doi:10.1038/s41598-024-67530-8.

    PMID: 39020004

This page is for informational purposes only and does not replace medical advice. Your rheumatologist and other specialists should personalize your relapsing polychondritis monitoring schedule, testing, and emergency plan.

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