Odd Sjogren’s results and medication reactions

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OhShoot

Established Member
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!
 
OhShoot said:
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!
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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.
 
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.
 
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