Sjogren’s Syndrome

by | Jun 18, 2023 | Sjogren’s Syndrome | 0 comments

Hopefully Sjogren’s Syndrome is my last chronic illness diagnosis! In 2019, my very astute autonomic neurologist at Mayo Clinic suspected I had Sjogren’s. He did typical blood tests, anti-Ro (SS-A) and anti-La (SS-B) antibodies, rheumatoid factor, and antinuclear antibodies. At that time, they were negative. Even the lip biopsy was negative. He did advise me that I could still have Sjogren’s, since a sizable percentage of patients initially test negative.  Now with my local rheumatologist, I have tested positive.

Experiencing the most common symptoms of very dry eyes and dry mouth, my ophthalmologist had already recommended artificial tears several times a day.

What I did not know at the time was that some of my systemic symptoms may have been from Sjogren’s as well:

  • difficulty swallowing
  • heartburn, and reflux
  • fatigue
  • dry skin
  • joint and muscle pain
  • peripheral neuropathy
  • GI dysmotility.

There can be several others, but these are the symptoms I regularly experienced.

Sjogren’s Syndrome can run in families. My mom had it, my adult daughter was recently diagnosed with it, so I asked my rheumatologist to rerun the blood tests for me. By now, my symptoms were more pronounced, and my ophthalmologist had prescribed cyclosporine (Restasis) eye drops for my worsening dry eyes. Only 40-70% of Sjogren’s patients are positive for SS-A or SS-B. In this link, you can read more: https://www.sjogrensadvocate.com/labs-for-dx

My rheumatologist stated that it is common to have more than one autoimmune disease and RA and Sjogren’s often co-exist. Luckily, I am now on a different JAK inhibitor, Xeljanz. It not only is treatment for my RA, but is in clinical trials for Sjogren’s. Presently, there is no specific treatment for Sjogren’s, although hydroxychloroquine is often used. Sjogren’s is treated symptomatically, and I do use several products to manage symptoms.

The Sjogren’s Foundation has been extremely helpful. Their website provides education, support, and advocacy. https://sjogrens.org/

I recently attended their online conference. It was surprising to hear that many rheumatologists still believe that Sjogren’s just means dry eyes and dry mouth don’t treat it. It is a systemic disease. Seek support and if your physician isn’t being helpful, reach out to the foundation. Sjogren’s patients have a higher chance of developing lymphoma and should be closely monitored.

If your physician is open to learning, here are the resources:

https://sjogrens.org/understanding-sjogrens/resources/information-for-your-doctor

In upcoming posts, I’ll be discussing how I manage my symptoms from my multiple conditions. Stay tuned…

 About Author Jan Hempstead

My name is Jan Hempstead and I’m an RN, although I medically retired sooner than I would have liked because of my multiple diagnoses. I’m also a mom, wife, sister and friend.

This blog is my story about living well with Ehlers Danlos syndrome (EDS), rheumatoid arthritis (RA), mast cell activation syndrome (MCAS), chronic kidney disease (CKD), hereditary alpha tryptasemia (HaT), dysautonomia and Sjogren’s Syndrome (SS).

I started out with EDS and one by one, another diagnosis kept getting added on. Come follow me as I share my journey with multiple specialists, what has worked and has not, and where I’m going next.

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