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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Rheumatology

Building Your Specialist Care Team

At a Glance

Systemic sclerosis (SSc) is a complex, rare disease that requires a multidisciplinary care team led by a specialized rheumatologist. Partnering with experts like pulmonologists and cardiologists ensures early detection of organ involvement and access to the latest therapies.

Systemic sclerosis (SSc) is a rare and complex disease that affects multiple parts of the body at the same time. Because it is so rare—affecting roughly 20 out of every 100,000 people—many general rheumatologists may only see a few cases in their entire career [1]. For this reason, building a multidisciplinary care team—a group of specialists who work together—is not just helpful; it is essential for protecting your long-term health [2][3].

Your “Medical Board of Directors”

In a multidisciplinary model, your rheumatologist usually acts as the “captain,” but they must collaborate with other specialists to monitor and treat specific organ systems [4][3].

  • Rheumatologist: The primary coordinator who manages your overall immune system and skin symptoms. Ideally, this should be someone with a specific interest or expertise in scleroderma [4].
  • Pulmonologist: Specializes in lung health. They are critical for monitoring and treating interstitial lung disease (ILD) and pulmonary arterial hypertension (PAH) [3][5].
  • Cardiologist: Focuses on the heart. SSc can cause rhythm issues or strain on the heart muscle, requiring specialized screening [6][7].
  • Gastroenterologist: Manages the digestive tract, from severe acid reflux to “slow gut” (motility) issues that can lead to malnutrition [8][9].
  • Dermatologist: Can help manage skin-specific issues like severe itching or calcinosis (calcium deposits) [10].
  • Occupational/Physical Therapist: Vital for maintaining hand function and preventing joint “contractures” (stiffness) [11][2].
  • Mental Health Professional: Navigating a rare, physically altering, and chronic illness carries a profound psychological burden. A therapist or counselor can provide vital emotional support throughout your journey [12].

Why Specialized Care Matters

Research shows that patients who receive care in specialized, high-volume centers often have better outcomes [13]. Specialists are more likely to:

  1. Spot Early Warnings: They know exactly which “red flags” to look for in your blood work or lung tests before you even feel symptoms [4].
  2. Access Advanced Therapies: Experts are familiar with the latest treatments, such as biologics or stem cell transplants, and can navigate the complex insurance requirements for these drugs [7][1].
  3. Coordinate Care: They understand how a treatment for one organ might affect another (for example, how certain blood pressure meds interact with Raynaud’s treatments) [3].

Preparing for Your First Specialist Visit

When you see a new specialist, you are essentially “hiring” them for your team. You should arrive prepared with your baseline assessment—a set of tests that establish how your body is functioning at the start of your journey [4][3].

Your Baseline Toolkit

Bring physical or digital copies of these results to your first appointment:

  • Full Autoantibody Profile: Knowing if you are positive for Scl-70, Centromere, or RNA Polymerase III is the most important piece of information for a specialist [14].
  • Pulmonary Function Tests (PFTs): Specifically your FVC and DLCO percentages [5].
  • Echocardiogram (ECHO): A baseline ultrasound of your heart [6].
  • High-Resolution CT Scan (HRCT): If you have already had a chest scan, bring the actual images on a disc if possible [4].
  • Blood Pressure Log: At least one week of daily at-home readings [15].

If you don’t have a specialist nearby, consider seeking a one-time consultation at a Scleroderma Center of Excellence. These centers can provide a comprehensive “road map” that your local doctors can then help you follow [16][13].

Common questions in this guide

What types of doctors should be on my systemic sclerosis care team?
A rheumatologist typically coordinates your care, acting as the captain of your team. Because the disease affects multiple organs, you will also need a pulmonologist, cardiologist, gastroenterologist, dermatologist, and physical therapist.
Why is it important to see a systemic sclerosis specialist?
Systemic sclerosis is very rare, meaning general doctors may only see a few cases in their careers. Specialists are more likely to catch early warning signs, understand how treatments interact across different organs, and offer advanced therapies.
What tests should I bring to my first specialist appointment?
Bring your baseline test results to establish how your body is currently functioning. This includes your full autoantibody profile, pulmonary function tests (PFTs), echocardiogram, chest CT scans, and a log of your daily blood pressure readings.
Should I travel to a Scleroderma Center of Excellence?
Yes, if you do not have an expert nearby, a one-time consultation at a specialized center is highly recommended. These centers can design a comprehensive treatment roadmap that your local doctors can then help you follow.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with systemic sclerosis do you currently treat in your practice?
  2. 2.Are you comfortable coordinating with my other specialists (pulmonologist, cardiologist, etc.) and acting as the 'captain' of my care team?
  3. 3.Do you follow a specific screening protocol for lung disease and pulmonary hypertension, such as the DETECT algorithm?
  4. 4.If my condition becomes more aggressive, do you have experience with advanced therapies like rituximab or referrals for stem cell transplantation?
  5. 5.Are you willing to work with a Scleroderma Center of Excellence if we need a second opinion or specialized testing?

Questions For You

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References

References (16)
  1. 1

    Systemic sclerosis and scleroderma renal crisis in African American patients.

    Kotamarti R, Hackshaw KV

    Journal of the National Medical Association 2025; (117(3)):179-184 doi:10.1016/j.jnma.2025.04.006.

    PMID: 40368669
  2. 2

    Caring for the Patient With Limited Systemic Scleroderma.

    Lachner KD

    Orthopedic nursing 2016; (35(1)):5-10; quiz 11-2 doi:10.1097/NOR.0000000000000212.

    PMID: 26814000
  3. 3

    Lung and gastrointestinal complications are leading causes of death in SCORE, a multi-ethnic Singapore systemic sclerosis cohort.

    Santosa A, Tan CS, Teng GG, et al.

    Scandinavian journal of rheumatology 2016; (45(6)):499-506 doi:10.3109/03009742.2016.1153141.

    PMID: 27232525
  4. 4

    Systemic sclerosis.

    Volkmann ER, Andréasson K, Smith V

    Lancet (London, England) 2023; (401(10373)):304-318 doi:10.1016/S0140-6736(22)01692-0.

    PMID: 36442487
  5. 5

    Is anticoagulative therapy in systemic sclerosis to be reconsidered?

    Marongiu F, Ruberto MF, Barcellona D

    Journal of scleroderma and related disorders 2024; (9(2)):81-85 doi:10.1177/23971983241256250.

    PMID: 38910594
  6. 6

    Early Cardiovascular Disease After the Diagnosis of Systemic Sclerosis.

    Aviña-Zubieta JA, Man A, Yurkovich M, et al.

    The American journal of medicine 2016; (129(3)):324-31.

    PMID: 26603342
  7. 7

    Autologous stem cell transplantation for progressive systemic sclerosis: a prospective non-interventional study from the European Society for Blood and Marrow Transplantation Autoimmune Disease Working Party.

    Henes J, Oliveira MC, Labopin M, et al.

    Haematologica 2021; (106(2)):375-383 doi:10.3324/haematol.2019.230128.

    PMID: 31949011
  8. 8

    Patient-reported gastrointestinal involvement is associated with reduced quality of life and disability in systemic sclerosis.

    Kéringer P, Kovács KT, Nagy G, et al.

    Journal of scleroderma and related disorders 2025; 23971983251345284 doi:10.1177/23971983251345284.

    PMID: 40488215
  9. 9

    Gastroesophageal Intussusception Treated With Combined Transoral Incisionless Fundoplication in a Patient With Systemic Sclerosis.

    Memon A, Dugan N, Muniraj T, et al.

    ACG case reports journal 2025; (12(4)):e01632 doi:10.14309/crj.0000000000001632.

    PMID: 40196291
  10. 10

    European Dermatology Forum S1-guideline on the diagnosis and treatment of sclerosing diseases of the skin, Part 1: localized scleroderma, systemic sclerosis and overlap syndromes.

    Knobler R, Moinzadeh P, Hunzelmann N, et al.

    Journal of the European Academy of Dermatology and Venereology : JEADV 2017; (31(9)):1401-1424 doi:10.1111/jdv.14458.

    PMID: 28792092
  11. 11

    Occupational Therapy Treatment to Improve Upper Extremity Function in Individuals with Early Systemic Sclerosis: A Pilot Study.

    Murphy SL, Barber MW, Homer K, et al.

    Arthritis care & research 2018; (70(11)):1653-1660 doi:10.1002/acr.23522.

    PMID: 29381834
  12. 12

    Patient perception of disease burden in diffuse cutaneous systemic sclerosis.

    Khanna D, Allanore Y, Denton CP, et al.

    Journal of scleroderma and related disorders 2020; (5(1)):66-76 doi:10.1177/2397198319866615.

    PMID: 35382406
  13. 13

    Comprehensive description of the prevalence, serological and clinical characteristics, and visceral involvement of systemic sclerosis (scleroderma) in a large cohort from the United Arab Emirates Systemic Sclerosis Registry.

    Namas R, Elarabi M, Khan S, et al.

    Journal of scleroderma and related disorders 2023; (8(2)):137-150 doi:10.1177/23971983221145788.

    PMID: 37287950
  14. 14

    Phenotype of limited cutaneous systemic sclerosis patients with positive anti-topoisomerase I antibodies: data from the EUSTAR cohort.

    Zanatta E, Huscher D, Ortolan A, et al.

    Rheumatology (Oxford, England) 2022; (61(12)):4786-4796 doi:10.1093/rheumatology/keac188.

    PMID: 35348643
  15. 15

    Spectrum of renal disease in scleroderma other than scleroderma renal crisis: A review of the literature.

    Farrukh L, Steen V, Shapiro L, et al.

    Clinical nephrology 2024; (102(2)):97-106 doi:10.5414/CN111243.

    PMID: 38699985
  16. 16

    A comprehensive framework for navigating patient care in systemic sclerosis: A global response to the need for improving the practice of diagnostic and preventive strategies in SSc.

    Saketkoo LA, Frech T, Varjú C, et al.

    Best practice & research. Clinical rheumatology 2021; (35(3)):101707 doi:10.1016/j.berh.2021.101707.

    PMID: 34538573

This page provides educational information on building a care team for systemic sclerosis and does not constitute medical advice. Always consult with your primary rheumatologist about referrals and care coordination.

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