Tuesday, July 9, 2019

Sjogren's Advocate: Newly Diagnosed

Sarah Schafer, MD and Sjogren's patient

I can't begin to express my admiration and appreciation of Dr. Sarah Schafer for so many things, but most recently, the creation of her website: Sjogren's Advocate.

If you haven't had a chance to read it, pour yourself a cup of coffee, boot up the laptop, and settle in for a thorough education in current Sjogren's Syndrome diagnosis and treatment.

All of the entries to her site are excellent, but one page in particular deserves particular attention: For the Newly Diagnosed. I have included a few excerpts here but please visit this page to read the discussion in full.

Because Sjogren’s is a complex disease, it requires a team of knowledgeable clinicians to provide optimal care. Creating a core health care team is an important priority for new patients.  While currently there is no cure, a lot can be done to alleviate symptoms and prevent complications. 
Newly diagnosed Sjogren’s patients face special challenges. The stress of a chronic disease diagnosis is often made worse when patients discover that many clinicians remain largely unfamiliar with Sjogren’s.   There are numerous stories of patients who have had their symptoms downplayed, ignored or psychologized, both before and after diagnosis.  Sadly, it is also common for patients to hear conflicting or incorrect information from their clinicians. A separate section will be created to provide strategies for countering common misperceptions.  
Despite the fact that it is common, serious and multisystemic, little attention is given to Sjogren’s by medical training programs. This means that patients often need to educate themselves-and their clinicians- in order to advocate for comprehensive, up-to-date care. This may seem a bit backwards, and it is!  Still, it is a worthwhile investment to try to find providers who are engaged and/or willing to learn about Sjogren’s. 
Priorities for the newly diagnosed 
1. Learn these Sjogren’s basics 
Sjogren’s is a complex systemic disease. It is much more than dryness.
Sjogren’s patients should be treated by a team of knowledgeable clinicians.
Sjogren’s can be hard to diagnose: clinicians sometimes disagree on the diagnosis.The diagnosis section can help patients deal with this conundrum.
"Early diagnosis and high-quality professional care are extremely important for Sjogren's patients. Currently, there is no cure for Sjogren's. However, treatments may improve various symptoms and prevent complications."
The Sjogren’s Foundation: https://www.sjogrens.org/home/about-sjogrens/treatments 
2.Understand the main goals for treatment 
Improve quality of life, usually by treatment of systemic, eye, and oral manifestations.
Prevent disease progression of both systemic and sicca features.
Screen and monitor for direct complications of Sjogren’s. Prevent when possible and treat as indicated. 
Screen and monitor for comorbidities. Prevent when possible, and treat as indicated.
Some clinical issues are important to address early on. Others can be addressed over time, depending on each person’s unique needs. To learn about the major areas of clinical concern, see Sjogren’s- Another look. 
3. Gather a core health care team 
At a minimum, this includes a primary care provider (PCP), a rheumatologist, a dentist, an ophthalmologist, and for women, a gynecologist. Most Sjogren’s patients see at least a few additional specialists. Sometimes a specialist is the first person to suspect - or diagnose - Sjogren’s. 
Choosing a PCP and a rheumatologist that are a good fit is usually at the top of the priority list. However, specific symptoms or complications may place other providers at the top of the list.  
 “Rheumatologists have the primary responsibility for managing Sjogren’s and usually are the lead of your ‘medical team.’ “   ~  May 2019 Moisture Seekers Newsletter.
Continue reading here

Bookmark the Sjogren's Advocate site and visit regularly. You can also sign up for regular site updates. The information to be found there is invaluable for new AND seasoned autoimmune disease patients.


Steff said...

Have you heard of Low Dose Naltrexone and SJOGRENS? I take it, helps with fatigue and muscle weakness?


annie said...

Thank you for another resoource for us to look into in times of need. My biggest resource and help actually came from your blog, Julia.

It is 10 years this year, that I was diagnosed with sjogren's. Like most people newly diagnosed, I did not know what sjogren's was, did now know where to look for answers when I had so many questions, and then I found your blog. I have all the books you've listed and they've been invaluable to me as my home library resources.

Every question I had I would look up on your blog and you would have something written on that topic.

I thank you from the bottom of my heart for helping me navigate the complex illness that is sjogren's. You helped a newbie through some tough times, and strange worrisome symptoms.

Julia Oleinik said...

Annie, thank you! So nice of you to share that.

Steff, I have not any experience with low dose naltrexone. Sorry.