What Care Do I Need?
- Sarah Schafer, MD
- Dec 8, 2024
- 4 min read
Updated: 14 hours ago
Ongoing Care - Part 1
People with Sjogren's often struggle to get proper care because:
doctors lack clear, standardized guidelines for monitoring the disease and
medical training focuses on dryness and pays little attention to how Sjogren's affects the entire body.
Systemic (non-dryness) manifestations and comorbidities are frequently missed until they cause serious, sometimes permanent, damage. This is why understanding and advocating for monitoring beyond dryness is essential for patients.
Finding and treating systemic manifestations EARLY
can help slow disease progression, can help you feel better,
and, in some cases, can even SAVE YOUR LIFE.
To get the most out of this post, including finding links to other posts in the Ongoing Care series, be sure to read HOW TO MONITOR SJOGREN'S. Â
This blog post is the first in an Ongoing Care series I have planned to help you advocate for comprehensive monitoring of Sjogren’s disease.Â
My views on Sjogren's are grounded in evidence-based research and my over 10 years of experience as a Sjogren's medical educator and volunteer on three Sjogren's Foundation clinical practice guideline projects, and my 23 years as an active member of the Sjogren's community. Sources are cited throughout Sjogren's Advocate.
One of the biggest challenges for Sjogren's patients is finding knowledgeable clinicians who understand the systemic nature of the disease.
Because of the persistent misconception of Sjogren's as a mild dryness (sicca) syndrome, many patients do not receive comprehensive care. Without standardized guidelines for monitoring, systemic manifestations are often overlooked, which leads to a higher than necessary disease burden and poorer quality of life.
People with Sjogren’s often ask:Â
Who treats Sjogren’s?
Who should be on my health care team?
How often should I see a rheumatologist?Â
What should my rheumatologist be checking during my physical exam?
What labs are important to check?
How does a rheumatologist determine the activity and severity of my disease?Â
What do rheumatologists consider when choosing treatments?
The Ongoing Care series will address these questions generally, and help you communicate with your clinicians about your unique Sjogren's care needs.
While every Sjogren's patient deserves regular rheumatology care and routine lab monitoring, individual needs vary and must be determined with your clinician.
Some patients may require frequent visits to a rheumatologist and other specialists. For others, annual check-ups and basic screening tests with a core Sjogren’s team are appropriate.
Â
Sjogren’s care is not just about treatments.
You can’t treat a condition if you don’t diagnose it.
You can’t diagnose it unless you look for it.
You won’t look for it if you don’t know Sjogren’s can cause it.Â
Â
Ongoing monitoring is essential to good Sjogren’s care.Â
Your clinicians need to understand all the ways Sjogren’s shows up in your body (your disease burden) to know how to best manage your disease. This is achieved by monitoring you for a wide range of systemic manifestations of Sjogren’s.Â
Defining the disease burden of a particular Sjogren’s patient requires an assessment of multiple organs and systems, even when there are no obvious symptoms.
Because each patient has their own unique version of the disease, Sjogren’s care should be individualized. My work on Sjogren's Advocate focuses on the importance of comprehensive monitoring and assessment of systemic manifestations, which are often overlooked, downplayed, or misattributed to other conditions. While routine lab tests are important, monitoring also requires a thorough clinical assessment.
Â
Why does Sjogren’s care often fall short?Â
Sjogren’s care is often inadequate because of a lack of adequate medical education, the persistence of myths and misconceptions, and the failure of rheumatology leaders to address the knowledge gaps and the lack of standardized care. Many rheumatologists remain unaware of the full spectrum of Sjogren's manifestations and the importance of comprehensive monitoring. This leads to under-diagnosis, delayed treatment, and poor patient outcomes.
When will there be a standard way to care for Sjogren’s patients?
Comprehensive monitoring of Sjogren’s will become the standard of care when medical education programs and rheumatology institutions, such as the American College of Rheumatology (ACR), communicate consistent, accurate information about the multisystem nature of Sjogren’s disease. While the Sjogren's Foundation is making progress, a collective effort is needed to drive systemic change. The Foundation’s clinical practice guidelines help standardize treatment, but few rheumatologists are familiar with them because the ACR does not post them on their website, like they do for other major rheumatic diseases.
System-wide change requires a top-down approach, which I have been advocating for through social media and email communications with rheumatology leaders, researchers, and Sjogren's experts.
My recent Healio Rheumatology article, 'My own diagnosis was delayed’: Sjögren’s myths overshadow multi-system manifestations, outlines the problem of inadequate care and recommends steps to address the ongoing misunderstanding and neglect of the disease.
Current clinical practice guidelines are helpful for guiding treatment of Sjogren’s, but do not provide clinicians with the guidance they need to monitor Sjogren’s in routine practice.
New treatments targeting systemic manifestations can serve as a wakeup call for the rheumatology community to establish standards for comprehensive Sjogren’s care.
New Sjogren’s treatments are expected to be approved soon. This is likely to increase attention to the disease and lead to a surge of new medical education programs. It is crucial that these educational efforts address the misconceptions that hinder accurate diagnosis and treatment. Current medical education programs often provide inconsistent information and reinforce misconceptions.
As patients, a new drug approval can be an opportunity to discuss the need for comprehensive care beyond sicca with your rheumatologist, even if you are not a candidate for the new treatment.Â
Until standard guidelines for monitoring Sjogren’s are established, Sjogren’s Advocate is here to help you work with your clinicians to advocate for comprehensive care beyond sicca.
This series is driven by the needs I’ve encountered in the Sjogren’s community.Â
I’m researching, putting together, and publishing information on comprehensive, ongoing care for Sjogren’s because no one else is doing this. In my experience, many rheumatologists want to provide comprehensive care, but often lack the necessary tools and guidance to address the full spectrum of Sjogren's. While I can’t write guidelines or offer medical advice, I can discuss general concepts and offer information that patients can share with their clinicians and use to advocate for comprehensive care.
Sjogren's Advocate focuses on monitoring, NOT treatment.
Treatment plans should always be developed in partnership with your doctor
and tailored to your specific needs.
Please see the DISCLAIMERSÂ page for more information.
This post was made possible by your donations to Bexi's GoFundMe campaign. Thank you.
