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CHAPTER 4

Treatment specialists

Meet some of the specialists who may be involved in your care and how they work together.

8 lessons
Total: tbc

Rheumatologists

A rheumatologist often leads your team, connects findings across organs, and helps closely coordinate your care.

Rheumatologists as your central coordinators of care

IgG4‑related disease (IgG4-RD) can involve several organs at once. That is why your care works best when one person helps guide the big picture. In many centers, the rheumatologist fills this role.

Because IgG4-RD is a disease of inflammation that can involve many organs, a rheumatologist, who is an inflammation specialist accustomed to managing multi-organ disease, serves as the coordinator. In the optimal arrangement, the rheumatologist will have insight into the full organ history of your disease, will order and sequence the right tests (labs, imaging, and biopsy), bring in other specialists at the right time, start and adjust anti-inflammatory and B-cell–directed treatments, and keep everyone aligned around one clear plan.

This lesson focuses on what rheumatologists do as central coordinators, how they partner with you and other specialists, and practical communication tips so your questions are heard.

What a rheumatologist does in IgG4-RD

A rheumatologist leads the team, ties evidence together, and gives you a central point of communication about your care.

The rheumatologist’s job is to understand the impact inflammation is having on your whole body and guide the course of your treatment.

Assessment and diagnosis.
Your rheumatologist listens closely to your story, delves into the details of your illness, and performs a head-to-toe examination. They order labs (including serum IgG4 and other potential biomarkers), imaging (CT, MRI/MRCP, ultrasound, sometimes FDG‑PET/CT), and coordinate a biopsy when needed. They gather clues from each test and compare them with your symptoms, because blood IgG4 levels can be normal in many people with IgG4-RD and high in some without it.

Coordinating the team.
The rheumatologist invites the right specialists—gastroenterology/hepatology, ophthalmology, pulmonology, nephrology/urology, neurology, radiology, and pathology—and ensures that results flow back to one central place. They help choose the safest way to obtain tissue, and when procedures like biliary or ureteral stents are needed to protect organs, they arrange timely referrals and follow-up.

Starting and adjusting treatment.
As the team lead, the rheumatologist prescribes and monitors glucocorticoids when quick relief is needed, then plans a steroid- sparing path. Many rheumatologists will discuss the early use of B-cell-targeted therapies to achieve disease control quickly and reduce steroid exposure. Your rheumatologist weighs the benefits and risks of potential treatments, considers the variety of immune-modulating therapeutic options, and builds a plan you can thrive by.

Preventing problems.
The rheumatologist watches for medicine side effects, supports vaccine planning, bone health, blood sugar and blood pressure, and screens for infections. They also track organ function (for example, kidney, liver, and pancreas tests) and adjust treatment as your body changes.

Documenting the plan.
A clear visit summary—what we found, what we will do, and why—keeps everyone aligned. This summary should be shared with you and with the rest of your team.

Communication tips you can use

Good communication turns a complex plan into a plan you understand and trust. Here are simple, effective strategies you can bring to each visit.

Before the visit
  • Bring a brief timeline of symptoms, major tests, and treatments tried.

  • List your top three questions. Put the most important one first.

  • Carry key imaging reports and any biopsy results. If possible, upload scans to your hospital’s system ahead of time.

During the visit
  • Ask for a plain‑language summary: “Could you tell me in simple terms what you think is happening?”

  • Confirm next steps using the teach ‑ back approach: “Let me repeat the plan to be sure I have it right.”

  • If biopsy is discussed, ask: “What organ biopsy and which biospy approach are safest and most likely to give an answer?”

  • If steroids are started, ask: “What is the exit plan from steroids?” and “How will we protect my bones and blood sugar?”

  • If rituximab or another immune therapy is considered, ask: “What benefits are expected? What are the risks, labs to monitor, and timing for vaccines?”

After the visit
  • Request a written visit summary and send it to other specialists.

  • Use your patient portal to report new symptoms early—especially yellowing of the eyes/skin, fever, vision changes, or new swelling.

  • Keep a simple flare diary (date, symptom, what helped) and bring it to the next visit. Again, IgG4ME! can be a big help with this.

igg4-app-image.jpg

Track your symptoms, questions, and more

The IgG4ward! Foundation’s personalized app, IgG4ME!, can be of immense help to both you and your rheumatologist in coordinating care. Use it to track the major issues with your case (timing of infusions, dates of vaccines, IgG4 levels, and so on). GET THE APP NOW >

Fireside Chats: lessons you can apply today

IgG4ward’s Fireside Chats bring leading clinicians together to explain what matters most, in language designed for patients.

Teamwork around the pancreas and bile ducts.

When jaundice or pancreatic swelling appears, rheumatology and gastroenterology coordinate imaging, ERCP/EUS, the possible placement of biliary stents, steroid trials to gauge treatment response, and biopsy to rule out cancer and guide immune therapy.

GI and Rheumatology—two hands on the same wheel to protect ducts and target the immune cause.

Retroperitoneal fibrosis (RPF): protect kidneys while immune therapy works.

Rheumatology partners with urology and nephrology to place ureteral stents when needed, then uses medical therapy to calm inflammation and prevent scarring.

“Relieve the squeeze, then quiet the storm—stents for safety, medicine for control.”

Shared decision-making: your voice is part of the treatment

Fireside experts encourage patients to be partners—ask questions, understand options, and agree on goals

“Your voice is part of the treatment—questions welcome.”

How the rheumatologist keeps everyone aligned

A good coordinator uses a few simple tools consistently.

One home for results. All notes, labs, imaging, and pathology reports flow back to th e rheumatology chart. Many patients find the IgG4ME! app a useful aid to keeping their records in one place and tracking key results and dates. This avoids duplication and mixed messages.

Case reviews. When needed, your rheumatologist may convene a brief virtual or in-person meeting with the key specialists to confirm the diagnosis and plan. This is especially helpful before major procedures or when pathology is complex.

Clear thresholds. You and your rheumatologist agree on when to call, when to visit the emergency department, and what changes should trigger earlier imaging or labs.

A living medication plan. Steroids are tapered as soon as safely possible. Steroid-sparing therapy is added when the chance of relapse is high or when side effects appear. Vaccinations (for example, influenza, shingles, pneumonia, and COVID) are timed around immune therapy, and infection-prevention steps are reviewed.

Where B‑cell therapy fits into the plan

In IgG4-RD, certain B cells and their progeny, plasma cells, collect in tissues and “talk” with T cells. This conversation drives inflammation and fibrosis.

Medicines that reduce specific B cells (such as inebilizumab) can calm this loop, which is why your rheumatologist often discusses them as part of a long-term plan. Researchers continue to study the best timing, dosing, and maintenance strategies.

Summary

Your rheumatologist is the central coordinator of IgG4-RD care, listening to your story, bringing the right specialists to the table, aligning test results, and guiding safe, effective treatment. With clear communication habits and a shared plan, you can move from uncertainty toward control, protecting organ function and quality of life.

References

1. Stone JH, Zen Y, Deshpande V. IgG4-Related Disease. N Engl J Med. 2012;366:539–551. URL: https://www.nejm.org/doi/full/10.1056/NEJMra1104650

2. Peyronel F, Della-Torre E, Maritati F, et al. IgG4-related disease and other fibro-inflammatory conditions. Nat Rev Rheumatol. 2025;21:275–290. URL: https://doi.org/10.1038/s41584-025-01240-x

3. Lang D, Zwerina J, Pieringer H. IgG4-related disease: current challenges and future prospects. Ther Clin Risk Manag. 2016;12:189–199. URL: https://doi.org/10.2147/TCRM.S99985

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