KNOW YOUR RHEUMATOLOGIST
Sjogren’s is a serious, multisystem disease, never limited to dryness (sicca). All Sjogren’s patients should be monitored for a variety of systemic manifestations.
Rheumatologists are the specialists who take the lead on Sjogren’s care. One of their main responsibilities is to detect and manage systemic manifestations in a timely manner. This often requires collaboration with other specialists.
Patients can often work with their rheumatologists to achieve comprehensive care. The first step in this process is for patients to learn how their rheumatologist approaches Sjogren’s.
Many rheumatologists are open to learning from patients who share reliable scientific information about Sjogren’s.
This page is for patients who have already been diagnosed.
A proper diagnosis guides monitoring, treatment, and prevention strategies. See this section to learn more about how Sjogren’s is diagnosed.
Rheumatologists (should) take the lead on Sjogren’s care
While Sjogren’s patients see a variety of specialists, the rheumatologist should be the team leader for Sjogren’s care. Primary care providers may be able to provide some basic Sjogren’s care but usually don’t have the training to diagnose and treat systemic features.
Rheumatologists should monitor Sjogren’s patients for systemic manifestations, regardless of symptoms or serostatus (e.g., SS-A positive or SS-A negative). Damage to the lungs, kidney, liver, etc. may often be detected by screening tests long before symptoms appear. Treatments are more effective when they are started before damage becomes irreversible (154,155,192).
See the Glossary to learn how symptoms differ from manifestations and features.
Some rheumatologists do not routinely monitor for systemic manifestations. Suboptimal care is common because unlike other rheumatologic diseases, there are few medical education programs that address Sjogren’s. Sjogren’s patients can do a lot to advocate for the care that they need.
How to find "good enough" Sjogren’s rheumatology care
There are few true Sjogren’s specialists, even though Sjogren’s is a common disease. Step one to finding “good enough” Sjogren’s care is for patients to clarify how their rheumatologist views and treats Sjogren’s.
The following list describes four typical ways that rheumatologists tend to approach Sjogren’s. These categories are not rigid, but describe trends based on hundreds of stories from people with Sjogren’s. Knowing how a rheumatologist lands among these groups provides a foundation for doctor-patient communication. A patient would approach a Sjogren’s-savvy rheumatologist very differently from one who insists that Sjogren’s is limited to sicca. Future pages will offer more detailed self-advocacy tools.
FOUR TYPES OF SJOGREN'S RHEUMATOLOGY CARE
Group #1 rheumatologists- view Sjogren’s as a serious multisystem disease that usually, but not always, includes sicca features.
Comments: This is the correct understanding of Sjogren’s. Patients who have a rheumatologist in Group #1 are fortunate. These rheumatologists usually understand that all Sjogren’s patients are at risk for systemic manifestations, comorbidities, and progression, regardless of SS-A status.
Group # 2 rheumatologists- view Sjogren’s as a sicca-predominant disease but acknowledge that many patients develop systemic manifestations.
Comments: This group often monitors for systemic disease, but may not do this consistently. Rheumatologists in this group may need reminders or requests for monitoring.
Group #3 rheumatologists- view Sjogren’s as mostly a sicca disease, with rare or occasional systemic involvement.
Comments: This group holds a common but incorrect view of Sjogren’s. They often do not monitor for systemic features and only test patients when they develop symptoms. Many believe, incorrectly, that seronegative (SS-A negative) patients can’t have Sjogren’s or don’t get systemic features.
This group may be workable if the rheumatologist is willing to provide comprehensive monitoring, use the Sjogren’s Clinical Practice Guidelines, and is open to learning new information from reliable sources.
Group # 4 rheumatologists- view Sjogren’s as sicca-only or do not treat Sjogren’s patients.
Comments: This group is not familiar with current Sjogren’s knowledge. It is usually best to find another rheumatologist.
Knowledge gaps about Sjogren's are common
Even the most Sjogren’s’-savvy clinicians are unlikely to know everything about this complex disease. Few rheumatologists are familiar with the high prevalence of Sjogren’s lung disease and neurologic manifestations, particularly autonomic disorders.
Most rheumatologists are unaware that the Sjogren’s Clinical Practice Guidelines exist. It is important for patients to share the Pulmonary and Systemic guidelines with every rheumatologist.
1. Be clear about your intention.
The goal is to determine the likelihood that a rheumatologist will provide ongoing monitoring and management of systemic manifestations. This should be an inquiry, not an inquisition. Try to approach your clinician with an attitude of genuine curiosity. It is counterproductive to criticize your doctor’s practice even if you feel they are not adequately informed.
TIPS- How to find out your rheumatologist's approach to Sjogren's.
Most rheumatologists want to do a good job.
Be kind! Rheumatologists work very hard. They depend on professional organizations such as the American College of Rheumatology (ACR) to stay informed. The ACR pays little attention to Sjogren’s and until 2022, perpetuated the mild sicca disease” myth on their website. Fortunately, many rheumatologists are open to working with and learning from their patients.
2. Start by asking your rheumatologist one or two open-ended questions.
Two key questions:
~ “How do you follow a typical Sjogren’s patient over time?”
~ “What kinds of tests do you do to look for systemic manifestations?”
Other possible questions:
~ “What can you tell me about the disease? What can I expect over time?”
~ “I don’t have Sjogren’s antibodies. Do you treat patients without these antibodies the same way you treat patients with the antibodies?“
~ “How will we know if the disease is getting worse? Is there a way we can keep this from happening?”
3. If your rheumatologist seems out of touch with general Sjogren’s knowledge, it may still might be possible to work together. This could be worth it if you have few options. You might try this approach:
~“Would you be willing to look at this Clinical Practice Guideline from the Sjogren’s Foundation with me as we talk about my care?”
~ “I have a ___ (a journal article, a Sjogren’s Foundation brochure, etc.) that addresses my concern about ___. Would you be willing to read this so we can discuss my concern in the near future?”
Make a plan for connecting: Phone, email, follow-up visit.
See the User Guide and Sjogren's Is More Than "Just Sicca" handout for more ideas, including examples for how to counter common misperceptions.