Sjogren’s Care Varies Over Time.
- Sarah Schafer, MD
- Mar 14
- 4 min read
Updated: Mar 15
Ongoing Care - Part 2
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.
INTRODUCTION
This blog post, part of our Ongoing Care series, outlines what optimal care for Sjogren’s disease looks like, starting at diagnosis and continuing throughout the course of the disease. This information will help you communicate with your healthcare team, especially rheumatologists, about getting the best care for your unique circumstances, which will change over time.
When you are first diagnosed, you will likely need more frequent doctor’s visits and a wider range of tests to establish a baseline picture of your Sjogren’s disease. After that, how often you need monitoring and which tests are indicated should be tailored to your individual needs.
While Sjogren's monitoring involves more than lab tests, they remain crucial. The specific lab tests needed will vary over time, and the tests used for diagnosis differ from those used for long-term management.
MONITORING FOR SJOGREN'S TIMELINE
Even if you do not have a rheumatologist who takes the lead on your care, understanding optimal Sjogren’s care over time can help you advocate for your monitoring needs.
IT IS THE JOB OF THE RHEUMATOLOGIST TO DO THE FOLLOWING:
1. Confirm the diagnosis of Sjogren’s, even if another clinician originally made the diagnosis.
Future blog posts will cover:
diseases with similar symptoms that need to be ruled out
screening for other autoimmune diseases that frequently occur alongside Sjogren's
the role of inflammatory and immune system markers during diagnosis
2. Establish the baseline burden of disease.
The rheumatologist establishes baseline disease activity, takes the lead of a core multidisciplinary team, and provides treatment and referrals as indicated.
Future blog posts will cover:
how clinicians determine disease activity, disease damage, and the overall burden of disease
baseline screening tests that are often missed
3. Assess each patient’s unique version of Sjogren’s over time.
Future blog posts will cover:
how often Sjogren’s experts recommend that patients see a rheumatologist for checkups and tests
reasons why some patients will need extra monitoring, such as symptom severity and risk factors for systemic manifestations including lymphoma and lung disease
special considerations for SSA-negative patients
special considerations for men, women of reproductive age, peri- and post-menopausal women
4. Take the lead on the monitoring and treatment of systemic manifestations and comorbidities over time.
Future blog posts will cover:
how Sjogren's experts monitor patients, the tests they typically use, and what those tests mean
the role of inflammatory and immune system markers during monitoring
why regular screening, monitoring, and prevention of health conditions that often occur with Sjogren’s (comorbidities) are an essential part of Sjogren’s care
TO GET THE MOST OUT OF YOUR CARE, YOU WILL ALSO NEED TO:
1. Be aware of red flags and Sjogren’s problems that require immediate attention.
2. Address fatigue
Future blog posts will cover:
my experience with severe Sjogren's fatigue
my methods for coping with fatigue
how I work with my doctors to address treatable causes of fatigue
3. Learn how to help your doctors help you
Future blog posts will cover:
key signs and symptoms that you should tell your doctor about
understanding the doctor’s perspective: challenges they face including limited time, training, and resources
how to prepare for your appointments and communicate with clinicians to get the best care possible
4. Counter misconceptions about monitoring
Future blog posts will cover:
self-advocacy tools for countering misconceptions that get in the way of proper care
why SSA-negative patients do need monitoring for systemic manifestations
common misuses and misinterpretations of tests including ANA/SSA/ SSB titers, ESR, and CRP
5. Understand the importance of routine medical screening and care.
Future blog posts will cover:
why it is important to understand that not every problem you have is caused by Sjogren’s
knowing what is Sjogren’s and what is not Sjogren's
how problems unrelated to Sjogren’s must be considered in your overall care plan
WHY YOU CAN TRUST THE INFORMATION ON SJOGREN'S ADVOCATE
I gather and synthesize information from a wide range of reliable scientific sources. I will write a blog post soon to explain my sources, research methods, and the limitations of current Sjogren's knowledge so you know why you can trust the content I am providing.
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 DISCLAIMERS page for more information.
This post was made possible by your donations to Bexi's GoFundMe campaign. Thank you.
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