What Care Do I Need?

Ongoing Care - Part 1

This blog post is the first in an Ongoing Care series I have planned to help you advocate for comprehensive monitoring and management of Sjogren’s disease. 

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: 

Who treats Sjogren’s?

Who should be on my health care team?

How often should I see a rheumatologist? 

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? 

What do rheumatologists consider when choosing treatments?

In my planned future Ongoing Care series, I will address these questions generally, because there is no one-size-fits-all answer.

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.

As part of this section on Ongoing Care, I will share my personal experience with comprehensive Sjogren's care to provide a real-world example. That does not mean you should get the same care I do. No two patients are exactly alike, and your health care providers should tailor your care to your specific needs.  

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. 

Ongoing monitoring is essential to good Sjogren’s care. 

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. 

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 underestimated and often neglected. While routine lab tests are important, monitoring also requires a thorough clinical assessment, which will be discussed in an upcoming blog post. 

Why does Sjogren’s care often fall short? 

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.

Systemic 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. 

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. 

I’m researching, putting together, and publishing information on comprehensive, ongoing care for Sjogren’s because no one else is. In my experience, many rheumatologists want to provide comprehensive care, but they 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. I’ve outlined the key blog posts I have planned below. I will be asking for your input to help guide the content of future posts.

As outlined below, this Ongoing Care series will require a lot of resources, and I will need Bexi’s design and editing support to make it happen. Your continued support of her work on Sjogren’s Advocate is much appreciated. Thank you. 

My Plan – Ongoing Care Series

Why monitor Sjogren’s?

Regular monitoring identifies systemic manifestations of Sjogren’s that might otherwise go unnoticed. This allows for early diagnosis and intervention, which can reduce disease progression and improve quality of life.

What Comprehensive Care for Sjogren’s Should Include

These are the areas that should be addressed by your Sjogren’s health care team, although not necessarily by the same clinician or during the same visit.

1. Systemic manifestations

Monitoring by organs and systems

Inflammatory markers

Immune markers

Risk factors for lymphoma and other severe/ life threatening manifestations

Special considerations for women: GYN/ pregnancy/ fertility/ menopause

Special considerations for men with Sjogren’s 

2. Immune comorbidities

3. General comorbidities

4. Quality of life and function

5. Psychosocial support 

6. Sicca (dryness)

Your Health Care Team

Learn who should be on your health care team, what role your primary care clinician plays in managing your Sjogren's, and what your role is as a patient.

My Ongoing Care

I will share how my healthcare team monitors and manages my Sjogren's, including specific lab tests they order. I will give examples of how I address gaps in care.

Commonly Overlooked Systemic Manifestations

Perils and Pitfalls of Current Sjogren’s Care

Red Flags

Sjogren’s manifestations that require urgent medical attention.

If you’re excited about this new series on Ongoing Care, you can help make it happen by supporting Bexi's work on Sjogren's Advocate.