Sarah Schafer, MD
Gems from the Sjogren's Foundation
Updated: Sep 20, 2022
The Sjogren’s Foundation website, www.sjogrens.org, is filled with wonderful, practical resources for patients. Here are a few gems:
1. Clinical Practice Guidelines (CPGs)
I cannot emphasize the CPGs enough. Many rheumatologists, dentists, and eye providers are unaware that these exist. Each type of provider should have a copy of the appropriate set of guidelines. These are an excellent tool to use for discussing treatment options. These can be helpful when rheumatologists say there are no treatments for Sjogren’s. Treatments do help, and these guidelines were created to help standardize practice. Large panels of Sjogren’s experts collaborated for many months (and countless volunteer hours) to create these guidelines. Phase II is underway. The Phase II CPGs will address a number of systemic complications as well as updates to the ocular and oral guidelines.
These are very well done, short, and easy to understand! Season 1 Episode 1 and Episode 2 provide a concise picture of the disease. I highly recommend viewing Episodes 1 and 2 with friends and family to help them understand what it is like to live with Sjogren’s.
3. Patient Education Brochures and Resources
These handouts are succinct and can be printed out. They provide a wealth of practical information about many Sjogren’s manifestations. Check out the extensive library.
4. National Patient Conference Lectures
You can order audio CDs or downloads of the lectures. The SF sends a copy of the slides so you can follow along while listening. Here are some of my favorite presentations by physician experts:
2019 Ocular Manifestations Dr. Esen Akepk - Eye manifestations, beyond dryness.
2019 Fatigue. Dr. Don Thomas - Dr. Thomas is an amazing, compassionate rheumatologist.
Every lecture given by him is a treasure!
2018 Joint Pain and Stiffness - Dr. Don Thomas
2016 Gynecological Issues - Dr. Rita Melkonian. Excellent overview.
2016 Where are we in Drug development? - Dr. Daniel J. Wallace. While there has been some progress in this area since his talk, most of the discussion still applies. 2022 The Kidney, Liver, and Pancreas in Sjogren's - Chadwick R. Johr
2022 Gastrointestinal Issues in Sjogren's Disease - Lucinda A. Harris
Key feature of Dr. Wallace's talk: This renowned Sjogren’s expert explains the fundamental design flaws in the only randomized controlled trial of Plaquenil done in Sjogren’s (the JOQUER trial). Many rheumatologists cite this single study as evidence that “Plaquenil does not work in Sjogren’s.” As Dr. Wallace explains, there are simply no good studies.
5. Conquering Sjogren's newsletter
Join the Sjogren’s Foundation and receive a monthly newsletter for patients. Becoming a member also allows you to access back copies of the newsletter as well as discounts in the store.
A WORD OF CAUTION:
On rare occasions, I see content from the patient newsletters or National Patient Conference lectures that I find dubious or unsupported by evidence. This is especially true of nutrition topics, which may be presented as fact, but are often largely opinion-based. Do remember to check with your health care provider if you have questions about a topic.