Promoting optimal care for Sjogren's, a common, serious, systemic disease.
Key links:
DIAGNOSIS
This section explains why a big-picture approach should be taken when diagnosing Sjogren's in adults. At this time, there is no one test that rules Sjogren's in or out.
Most Sjogren's cases continue to fly under the radar, leaving countless individuals without proper care, which leads to poorer outcomes. Lengthy delays in diagnosis can be attributed, in part, to misunderstanding of the uses and limitations of diagnostic tests. Rigid adherence to the classification criteria or requiring SSA for diagnosis is a major reason that most people with Sjogren's remain undiagnosed.
Please read the INTRODUCTION TO DIAGNOSIS page first because it is important for understanding all of the other pages.
Introduction To Diagnosis
Why Sjogren’s is a “big picture” diagnosis and why timely diagnosis is important
Sjogren’s Classification Criteria
Classification Criteria are a useful research tool, but they are not diagnostic criteria.
There are no diagnostic criteria for Sjogren's. Sjogren’s is a big picture diagnosis that takes into account many factors. Many people with Sjogren’s do not meet the Sjogren's classification criteria, especially younger people, those with neurological presentations, and SSA-negative patients. or early in the disease.
Lip Biopsy (Minor Salivary Gland Biopsy)
A lip biopsy is often a useful diagnostic tool, especially for seronegative (SSA negative) patients. It is not a perfect test; this page explains more about false positive and false negative lip biopsies.
Laboratory Tests Used To Support A Diagnosis Of Sjogren's
Learn about the core tests used to support a diagnosis of Sjogren’s. This section does not cover every test nor does it discuss tests that are used to monitor the disease.
PCP Steps To Diagnosis
Lists common presentations of Sjogren's and the first steps that primary care practitioners (PCPs) can take to diagnose Sjogren’s. While this page is written with PCPs in mind, it is also helpful for other clinicians and patients.
Self-Advocacy For Diagnosis
This page offers practical strategies for overcoming barriers to diagnosis, including ideas for countering common biases, dismissiveness, and psychologizing comments.
Why is it so hard to get diagnosed?
This blog post describes the reasons it is difficult to get diagnosed and provides you with an important self-advocacy tool from the Sjogren's Foundation and instructions on how to use it to advocate for diagnosis and better care.
Myths About Diagnosis
This page lists common myths about the diagnosis of Sjogren’s countered with the current understanding of the topic using the best scientific evidence available. Self-advocacy tools are offered to counter each myth.
Delayed And Missed Diagnosis
Long delays to a diagnosis of Sjogren's are the norm. Most people living with Sjogren’s remain undiagnosed for many reasons. Knowing what these reasons are can be useful for being able to advocate for a diagnosis and appropriate care.
Salivary Gland Ultrasound
The salivary gland ultrasound is increasingly being used in place of the lip biopsy at academic centers, although sometimes both tests are done. The reliability of this test when utilized outside of academic medical centers remains unknown.
The upside of the salivary gland ultrasound is that it is noninvasive. However, like the lip biopsy, there are false positive and false negative results. I chose not to write more about this test until it is more widely used.
Updated 03-29-2024