If not Sjogren's Syndrome, then what?

[Holley]

On occasion I experience dry, irritated eyes combined with a rash on my legs or arms and vaginal dryness. These are all symptoms of Sjogren's. I was tested several years ago and it came back negative. Any other ideas of what it could be? And yes, I have APS.

[Lure2]

Hi Holley,

I wonder if you have a Doctor who understands that we have to take bloodtest rather often as there are also negative bloodtests with negative antibodies. HS/APS and Sjögrens syndrome go hand in hand very often together with Thyroidea-issues.

Even if you have tested negative some years ago you could be positive today. It is also possible to have Sjögrens without antibodies and you can do a Schirmers test (think that is the name) or a biopsy also to find out.

See an eye-doctor who can examine your eyes and give you eyedrops also.

Hope your anticoagulation is working well. That is very important!

So I hope you have that Doctor we always (at least I) talk about here. That is really important though.

Best wishes from Kerstin in Stockholm

[MaryF Administrator]

Myself also, MaryF

[Manofmendip]

Hi Holley

I agree with Kerstin.

I have periods of very dry eyes and mouth, which also coincide, often, with migraines. Prof Hughes told me it was Sjogrens Syndrome but the Hospital in Bath, where my APS is managed, tested me and said that I was not genetically disposed to Sjogrens!

From my symptoms I am minded to believe Prof Hughes and not the Dr in Bath.

Dave

[SquarePegGuy]

Same with my wife, except for the APS. Plus, she had pain and swelling of both parotid glands at the same time. Blood test, Schirmer's test and biopsy were all negative, except for elevated CRP. We still don't have a diagnosis other than that vague Connective Tissue Disease.

I hope you treat the rash. Keep it clean, don't scratch. My wife's rash developed into cellulitis and she had to be hospitalized. Tell your doctor about any swelling or redness so you can get a topical antibiotic.

[Holley]

Thanks for all the responses. Sorry for the delay in responding! I'm an elementary school special education teacher and the end of the year is incredibly hectic!

I have a wonderful hematologist who manages my APS. He's the head of hematology at a major university hospital here in DC. I'll bring up the stuff you guys mentioned when I have my annual appointment over the summer.

Not sure if you've followed any of the crazy Donald Trump and his healthcare laws craziness but those of us with pre-existing conditions (which is pretty much everyone) are a bit more stressed these days.

Lisa