The 7 Components of Sjogren’s Care
- Sarah Schafer, MD
- 4 days ago
- 5 min read
Updated: 3 days ago
Ongoing Care - Part 4
To get the most out of this post, including finding links to other posts in the Ongoing Care series, read HOW TO MONITOR SJOGREN'S.
INTRODUCTION
It can be challenging to advocate for comprehensive Sjogren’s care because it requires a deep understanding of your own needs. This post simplifies the advocacy process by:
Outlining the 7 essential components of comprehensive Sjogren's care.
Identifying the specific clinicians who can help you manage each component.
The foundation of effective Sjogren's management is a multidisciplinary team of clinicians led by your rheumatologist. While you will find some examples of what doctors should be checking you for, these are for the purpose of illustration and not a full list. Future posts will offer more details, including guidance on how to identify and address specific gaps in your current care. You will find a list of self-advocacy resources at the end of this post.
Isn’t there a checklist of all the lab tests I should get? No. It's not that simple.
While there are some basic screening tests every Sjogren’s patient should have, your care must be individualized to your unique needs. Effective monitoring involves more than just lab tests and the tests that are chosen must be interpreted within the context of your overall clinical picture.
THE 7 COMPONENTS OF SJOGREN'S CARE
Comprehensive Sjogren's care can be organized into seven broad categories:
1. diagnosing Sjogren’s and ruling out mimics,
2. monitoring for immune system comorbidities,
3. monitoring and managing systemic manifestations,
4. monitoring and managing sicca,
5. screening, monitoring, and treating general comorbidities,
6. addressing fatigue, pain, and cognitive dysfunction, and
7. addressing the impact of Sjogren’s on your life.
For a variety of reasons, most patients do not get all their Sjogren’s-related needs met, especially item 3, monitoring and managing systemic manifestations, and items 5-7. Learning about the care you need will help you have productive conversations with your doctors about your unique needs.
There is no category for lifestyle measures like diet, sleep, exercise, and stress reduction because these should be woven into every part of your Sjogren's care.
While a healthy lifestyle can support your overall health and help you feel better, it does not replace the need for professional medical management.
NOTE: The content on Sjogren’s Advocate, including this blog post, is for educational purposes only, and is NOT medical advice.
1. Diagnosing Sjogren’s disease and ruling out mimics
Sjogren’s is a big picture diagnosis that considers the entire clinical picture, not just tests. It is good to rule out diseases that can mimic Sjogren’s disease because an accurate diagnosis is important for guiding care.
A PCP’s job is to recognize the signs and symptoms of Sjogren's, order initial tests, and then refer you to a rheumatologist if Sjogren's is suspected. Unfortunately, few PCPs have been trained to recognize typical presentations of Sjogren’s and patients often need to request a diagnostic workup.
Rheumatologists are responsible for confirming the diagnosis of Sjogren's, even if another doctor has previously diagnosed it. Rheumatologists are also responsible for ruling out rare diseases that can mimic Sjogren’s, such as amyloidosis and IgG4-related disease, but only if signs and symptoms indicate they might be present.
A primary care practitioner (PCP) or rheumatologist can use blood tests to rule out HIV and Hepatitis C, which can cause dryness and fatigue, just like Sjogren’s.
2. Monitoring for immune system comorbidities
It is essential to monitor for other autoimmune and rheumatic diseases that occur at much higher rates in people with Sjogren’s.
A rheumatologist should look for signs and symptoms of immune system comorbidities such as lupus, rheumatoid arthritis (RA), systemic sclerosis, axial spondylitis, and psoriatic arthritis. This should start at, or near, the time of diagnosis and continue over time, as these diseases can arise at any point in the course of Sjogren’s disease. For example, a Sjogren’s patient who has a positive blood test for Anti-Citrullinated Protein Antibody (ACPA) should be closely monitored for signs and symptoms of RA.
PCPs, rheumatologists, or other specialists can monitor patients for non-rheumatic autoimmune comorbidities, including Hashimoto’s thyroiditis and celiac disease.
3. Monitoring and managing systemic (non-dryness) manifestations of Sjogren's disease
This is the most complex and neglected part of Sjogren’s care. Every Sjogren’s patient, regardless of symptoms or antibody status (e.g., SSA/SSB) should be routinely monitored for a wide range of systemic manifestations, but many are not.
A rheumatologist, often in collaboration with other specialists, should take the lead on monitoring and treating systemic manifestations.
PCPs can help by ordering standard screening tests, such as a complete blood count (CBC), and make referrals to specialists as needed, although the rheumatologist usually takes the lead on these tasks.
Gynecologists should manage any pregnancy risks and complications, as well as other gynecological conditions that are impacted by Sjogren’s.
4. Monitoring and managing sicca (dryness) of the eyes, mouth, vagina and urinary tract
Eye doctors, dentists, and gynecologists are all part of the core healthcare team for managing sicca in their specialty area.
5. Screening, monitoring, and treating general comorbidities and preventing them where possible
PCPs, rheumatologists, and other specialists screen and offer preventive measures for general comorbidities such as infections and cardiovascular disease, which are among the top causes of early mortality in Sjogren’s.
6. Addressing fatigue, pain, and cognitive dysfunction
Rheumatologists and PCPs should work together to address these core, systemic Sjogren’s features that have a major impact on quality of life for most patients. These symptoms have multiple possible causes, which will be covered in more detail in future posts. It's important to identify and treat the underlying causes. For example, iron deficiency and autonomic disorders are treatable causes of Sjogren’s fatigue. Similarly, joint pain can often be effectively managed with anti-rheumatic drugs.
7. Addressing the impact of Sjogren’s disease on work, family, social connections, mental and emotional health
Living with Sjogren's can have a significant and life-altering impact that extends far beyond physical symptoms.
While addressing the emotional and mental toll should be a routine part of care, it is often overlooked. Item 3 in the Resources section below can help you manage these crucial aspects of the disease.
RESOURCES TO HELP YOU ADVOCATE FOR
COMPREHENSIVE SJOGREN'S CARE
1. Finding a rheumatologist knowledgeable about Sjogren's disease.
Finding a rheumatologist who knows how to care for the wide range of systemic Sjogren’s manifestations is key to getting the care you need.
Resources:
Join the Smart Patients Sjogren’s group or a local support group and ask other patients for referrals to Sjogren’s-knowledgeable rheumatologists in your area.
2. Self-advocacy tools and strategies for getting care for Sjogren's disease
Resources:
Resources from Kristina Kelly at Little Engine Patient Advocacy
Book: How to Be a Badass in a Broken Healthcare System
Video Course: Streamlining Sjogren’s I've teamed up with Kristina Kelly to help you talk to your doctors about your Sjogren’s care. Our goal is to give you the tools you need to communicate effectively, especially if you're feeling intimidated, overwhelmed, or frustrated by your current care
3. Mental, social, and emotional wellbeing
Resources:
Book: How to Be a Badass in a Broken Healthcare System, by Kristina Kelly, especially Chapter 5, “Navigating Support Systems and Finding your People”.
4. Learn why relying on health gurus or wellness influencers for information and advice about Sjogren's can be a mistake
Resources:
Blog: Are You a Victim of the Wellness Industry? by Bexi Lobo, PhD
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