Odd Sjogren’s results and medication reactions

I’ve had my Sjogren’s antibodies tested four times and SSB has come up alone every time. I also react badly to a lot of medications and have trouble recovering—for example, I am still dealing with arm pain and itchy scalp I got from two antibiotics I took spring 2018. And of course I have the general ME symptoms.

I think I have some kind of autoimmune disorder, but I don’t exactly fit anything so doctors don’t want to try any treatments. Does anyone have any ideas for diagnoses to pursue or other specialties I can try, or even ways to try autoimmune treatments without a diagnosis? TIA!

 

I tested positive for Sjogren's, yet I don't have any of the symptoms you would expect to see with it. I have an appointment with a Hematologist in two weeks to see if they can make sense of my test results, as so far three doctors don't know what to think of them.

 

Sjogren's Syndrome often presents with mouth ulcers. So does Bechet's Disease.

https://en.wikipedia.org/wiki/Sjögren_syndrome
https://www.nhs.uk/conditions/sjogrens-syndrome/

https://en.wikipedia.org/wiki/Behçet's_disease
https://www.nhs.uk/conditions/Behcets-disease/

What does SSB stand for?

 

SS-A or SS-B antigen.

 

SS-B is also called La and SS-A is also called Ro. It is generally agreed that although antibodies to both are associated with Sjogren's it is the anti-Ro antibodies that are directly relevant.

The problem with these antibodies is that on their own they do not mean much. Moreover, even having a diagnosis of Sjogren's does not mean much in terms of pointing to treatments since I have not seen anything much that actually targets Sjogren's usefully.

It is worth remembering that almost everybody has a few autoantibodies if you look hard enough. Unless they are clearly linked to clinical problems they do not mean anything in most cases.

 

A lip biopsy is considered the 'gold standard' for diagnosing Sjogren's.

In my case I have many of the classic symptoms associated with Sjogren's (decreased tear production, dry mouth, small fiber neuropathy & low complement C3) yet I am negative for both SS-B and SS-A. I decided against having a lip biopsy and my rheumatologist said it didn't matter anyways because it wouldn't change what medications she prescribes me.