Sjogren's Syndrome?

Hello @di341, I did find some information on the topic that may be helpful.

"SS-B antibodies are less common, being found in approximately 30-50% of Sjögren's syndrome patients. SS-A antibodies thus occur commonly by themselves. However, it is very uncommon for SS-B antibodies to occur alone. Accordingly, 20-40% of Sjögren's syndrome patients may lack SS-A and/or SS-B antibodies."
-- Blood and Urine Tests - Johns Hopkins Sjögren's Center: https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/blood-and-urine-tests/

Have you thought about seeking help at a local teaching hospital or major health facility like Mayo Clinic?

Thank you, John! That is so amazing of you to find for me! These autoimmune diseases are so elusive and hard to DX. I think my doctor is thinking of it as a "working title", as in a movie script. Assuming its presence but not completely convinced. I have cataracts and allergies which produce dry eyes and mouths by taking those meds. So not sure what to attribute the dryness to and the mystery continues. I wonder how high a number in the SS-A antibodies is indicative for Sjogren's without much doubt and does it point to anything else. On with the quest.

I live near UCSF.

@di341, Hoping you find some answers on your health journey. There are quite a few other discussions on Sjogren's along with many comments by members. You might find it helpful to scan through some of the discussions and comments. Here is a link for the search results: https://connect.mayoclinic.org/search/?search=Sjogren%27s.

Can you keep us updated on your quest to find answers?

You can be seronegative and still have Sjogren's Disease. I was diagnosed based on a lip biopsy, plus symptoms. Sjogren's is systemic, and usually impacts multiple systems (e.g. lungs, heart, digestive, etc.).
Inflammation from Sjogren's led to rapid development of cataracts in my case - going from "probably never need cataract surgery" to "need it within the next six months or so" from one year to the following.

Agree with all the above comments about being seronegative, and still have Sjogren’s. In my case I had all the physical symptoms but the SSA and SSB were negative. I lost my salivary glands in my submandibular area and had a sever hemorrhage due to dry eyes, premature cataracts, and my lip biopsy was positive for Sjogren’s but below the 1.0 threshold. We kept looking for the cause and found my ANA was abnormal, C4 complement was abnormal and I was suffering from esophageal spasms and constant choking. My Rheumatologist ran an early Sjogren’s test and it was positive and we started Plaquenil (hydroxychroloquin) as a first treatment. It took about 4-6 months to take effect but it has been very effective on many of the symptoms. I did get very ill with a bronchial infection last flu season and we kept testing and found that along with the Sjogren’s, I have selective Primary immunodeficiency, IgM and Rheumtoid arthritis. I started monthly IVIG 5 months ago and get infusions of Octagam every month. I am finally feeling better and many of my symptoms have been getting better, or at least not getting worse. My adult daughter was showing many of the same symptoms and when she was tested for early Sjogren’s she showed the highest abnormal score ever recorded. She has been started on Plaquenil and after 4 months is finally getting some relief from symptoms. But she too has other autoimmune conditions being assesses. Apparently they often come in 2-3 at a time and medications can work for a while and then they stop working and other treatments have to be tried, My heart breaks for what you are going through and I hope some of our shared journeys can help you. So many practices are not fully trained in diagnosing Sjogren’s and much damage can happen quietly, with permanent loss of glands throughout your body, and organ involvement and damage if not treated aggressively. Hope this helps you.

Thank you to everyone for taking the time to help me here. I haven't had another flair up but have had broken blood vessels from time to time in my eyes.

I have had esophageal spasms and choking for over 20 years. A "corkscrew" spasm on imaging when drinking barium. I didn't know that could be associated, interesting.

I have an overactive immune system and heal very quickly. I've never had COVID.

It sounds like I should think about being seen at a University hospital. Thank you again for sharing your journeys.

What department would I request an appointment from?

I think it would be Rheumatology. Here's some information from Mayo Clinic - https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/diagnosis-treatment/drc-20353221.

The second test to confirm Sjogrens is a biopsy of the salivary glands. They take four glands and test them. If they come back positive you definitely have it. The test is done by an ENT. I just had it done. While your lab work is high I would schedule the biopsy. It took less than three minutes to numb it, take the glands and two stitches.

I also have Sjogren's and have been on Octagam for over a year.
my rheumie took me off plaquenil as she felt the IvIg should be sufficient. I also have muscle wasting and loss of balance which seems worse. Sence the plaquenil has a type of leg pain associated with it, she didn't want it clouding the issue. You might ask your rheumie about it.