Promoting optimal care for Sjogren's, a common, serious, systemic disease.
Key links:
DIAGNOSIS
This section explains the correct approach to Sjogren’s diagnosis in adults. This information has helped many patients get diagnosed. I go into great detail because misperceptions about diagnosis are common.
You will read about barriers to diagnosis and how to counter incorrect information. Some clinicians inappropriately limit diagnosis to patients who meet the Classification Criteria, or worse, insist that patients must have Sjogren’s antibodies to be diagnosed. This leaves many people with Sjogren’s undiagnosed and untreated.
Please read the Introduction to Diagnosis page first because it is important for understanding all of the other pages.
Introduction to diagnosis
Explains 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 at this time: Sjogren’s is a clinical diagnosis that takes into account many factors. Many Sjogren’s patients do not meet these criteria, especially early in the disease.
Lip biopsy (minor salivary gland biopsy)
A lip biopsy is often a useful diagnostic tool, especially for seronegative (SS-A negative) patients.
Laboratory tests used to support a Sjogren’s diagnosis
Learn about the core tests that used to help diagnose Sjogren’s. This section does not cover every test. It does not discuss tests that are used to monitor the disease.
PCP steps to diagnosis
Lists common presentations and the first steps that primary care providers (PCPs) can take to diagnose Sjogren’s. While this page is written with PCPs in mind, it is also helpful for patients and other clinicians
Self-advocacy for diagnosis
Offers practical strategies for overcoming barriers to diagnosis. This page includes ideas for countering common biases, dismissiveness, and psychologizing comments
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.
Delayed and missed diagnosis
Long delays to diagnosis are the norm. Most people living with Sjogren’s remain undiagnosed. Learning the many reasons for this can be useful for self-advocacy.
Salivary Gland Ultrasound
This test is increasingly being used at academic centers in place of the lip biopsy. The upside is that it is noninvasive. The reliability of this test, when utilized outside of academic medical centers, remains unknown. Like the lip biopsy, there are false positive and false negative results. I chose not to cover this test until it is more widely used and more is known.
Updated 11-13-2023