Another Look at Sjogren's
Updated: Sep 28, 2020
This new section provides a framework for understanding comprehensive Sjogren’s care. Each of the following four areas should be addressed with every Sjogren's patient:
1. Glandular (sicca) manifestations
2. Extraglandular manifestations: including EGM that are missing from the "official" list, also called "Out of ESSDAI EGM." See the Always Systemic page for explanation. 3. General systemic symptoms- fatigue, pain, brain fog, etc.
4. Comorbidities- Conditions that often co-occur in Sjogren's, but are not thought to be direct manifestations. I will build on the baseline knowledge laid out in Always Systemic in future sections about ongoing care. Among other things, I plan to address strategies for dealing with:
Clinicians who are largely unfamiliar with Sjogren's (most PCPs)
Misperceptions such as being told incorrectly that Sjogren's is usually not systemic
Specific incorrect statements from providers such as "You can't have Sjogren's without Sjogren's antibodies," or "You are in remission because your CRP is normal."
Many clinicians do not address Sjogren's care with a comprehensive approach. Patients often need to be highly informed self-advocates in order to get good care. Until there is better clinician education and awareness, my goal is to help you do that!