The biggest challenge that many Sjogren’s patients face is finding a rheumatologist who is engaged and up to date on their disease. Like rheumatoid arthritis and systemic lupus erythematosus,
Sjogren’s is a serious, systemic autoimmune disease. Yet many patients are told by their rheumatologists that Sjogren’s is no big deal, mostly a nuisance dryness disease.
The understanding of Sjogren’s as a localized sicca syndrome was outdated by the turn of the century. Yet this old idea persists. Most PCPs that I have taught still think of Sjogren’s as unimportant, and have no idea how to recognize it or take the first steps to diagnosis. The neglect of Sjogren’s is perpetuated by inadequate medical education at every level. Changing medical culture can be a long uphill climb, even when it is clear that suboptimal care, or sometimes no care at all, is the norm.
Rheumatologists are the specialists who are supposed to take the lead in Sjogren’s care. Their central role includes:
1. Verification of diagnosis, as early as possible in the course of the disease.
common associated autoimmune diseases
complications (systemic and sicca)
comorbidities
3. Prevention of disease progression and comorbidities.
4. Management of general systemic features that often severely impact quality of life.
5. Treatment of serious organ system, neurologic and other complications, usually in collaboration with other specialists.
6. Determination of lymphoma risk; initiation of evaluation and referrals as indicated.
Few Sjogren’s patients receive the comprehensive care described in items 1-6. To make matters worse, patients frequently report hearing incorrect information from their rheumatologists such as “You can’t have Sjogren’s because your SS-A is negative,” or “Treatments don’t work,” or “Sjogren’s can’t kill you.” When a rheumatologist believes (or insists upon) these incorrect views, it makes it easier for them to rationalize their neglect of Sjogren’s patients.
When patients do not get good information from their doctors, they often turn to the internet. If they are fortunate, they land on a good resource such as www.sjogrens.org, or this website, Sjogren's Advocate. Many supposedly reliable websites, including the one from the American College of Rheumatology (ACR), downplay systemic features of Sjogren's and overemphasize sicca. This is a disservice to patients and reinforces the idea among rheumatologists that Sjogren’s does not need special monitoring and treatment beyond dryness care.
How can so many rheumatologists justify providing minimal care or no care at all to their Sjogren's patients?
In recent years, I have asked several Sjogren’s-savvy rheumatologists to explain why so many of their colleagues remain ill-informed. The answers have been sad, but not surprising. In a nutshell, this is what I heard: Sjogren’s patients are complicated and time-consuming. Rheumatologists are already overworked and under-compensated for the work that they do. Sjogren’s treatments do not provide a dramatic improvement in many cases, which is frustrating to both patients and doctors. In other words, we are hard to care for, and treatment options are limited.
Optimal care is nuanced and must be customized to each patient’s particular set of manifestations. This requires patience and creativity, along with the expectation of a trial and error process with both medications and lifestyle interventions. Deeply experienced clinicians know that there is as much of an “art” to Sjogren’s care as there is an evidence-based practice, because Sjogren’s lags far behind other diseases in clinical research. It is often easier for rheumatologists to say “Treatments don’t work” than it is to provide this level of care.
Many patients feel unheard and abandoned by their rheumatologists. Some say things like “They just can’t see how sick I am!” Some doctors even blame patients for common Sjogren’s features such as severe fatigue, widespread pain, brain fog, dysautonomias, and neuropathies. These known manifestations of the disease are often psychologized or ignored. Patients are often told that these symptoms are from "fibromyalgia", despite being core direct features of Sjogren's..
Some patients are told that that they will be fine if they just lose weight, exercise, or stop worrying so much about their health. Recently, one patient was told by her rheumatologist that she needed to focus on other things in her life and pray more! These comments harm patients and deny them the care they need and deserve.
Timely diagnosis and early treatment is a core guiding principle in rheumatology.
Despite this, rheumatology professional organizations (ACR, etc.) do not promote early diagnosis or comprehensive care for Sjogren’s. ACR materials and rheumatology conferences repeatedly fail to highlight Sjogren’s as a key topic. This reinforces the idea that it is not important to pay attention to Sjogren’s. The ACR does not promote the Clinical Practice Guidelines for Sjogren’s (CPGs). The Sjogren’s Foundation took the lead on this monumental project when the ACR would not. The creation of CPGs involves a rigorous, ongoing process. CPG working groups draw on the knowledge of expert clinicians, researchers, and patient representatives. Because the ACR did not create these CPGs, they will not post them on their website.
Many rheumatologists remain unaware that Sjogren’s CPGs exist. They often learn about this wonderful resource from patients who bring them copies.
While it is true that rheumatologists are under a lot of pressure, they must ultimately take responsibility to educate themselves about Sjogren’s. Some rheumatologists are open to learning from their patients about CPGs, Sjogren’s Foundation publications, and citations from the academic literature. Printable handouts for clinicians are available in the Resources section of Sjogren's Advocate.
Some rheumatologists will not wake up to “Sjogren’s reality” until more effective treatments are available or better biomarkers for diagnosis and disease monitoring are identified. Hopefully, patients can influence their own rheumatologists to learn more about Sjogren’s. The good ones will be eager to learn.
