Christine, thank you so much for the information. It may be that it's a quadruple whammy. It took 39 years to finally get a diagnosis of Sjogren's. I discovered it by going to the library at NIH years ago when I lived in Bethesda - ended up getting it confirmed at Duke in NC - primary Sjogren's - so far thankfully I have developed RA, lupus, scleroderma. I only have Raynaud's which I think is in the same family. Anyway, thank you again and I'll definitely read more under the sites you provided. Have a good day. Barbara

I'm so sorry it was so difficult for you to get the proper diagnosis. If I hadn't read about Sjogren's, I would not have had any idea why I would get internal stys and cysts in the lower part of my eyelids and would have to have them cut out - as a kid - 12, 13 yrs old - very paintful. Over the years I've had severe reactions to eye drops, which I finally figured out was due to preservatives. I've ended up out of work with severe, painful eye inflammations from preservatives! It's been a journey. I'm in my late 70's now and when a doc sees dry eyes - oh well a lot of women have dry eyes at late age. Not the same! Duke diagnosed it back in the 80's as probable "primary Sjogrens's" meaning I didn't have another autoimmune illness, yet, but that I might later develop one. Around the same time I was diagnosed with Raynaud's, so I don't know if that makes the Sjogren's primary or secondary. Usually, Sjogren's is secondary to the other illnesses I mentioned.
How are you doing at this point? It sounds like you've been smart and learned a lot and you're an advocate for yourself. Good for you! Thank you for the websites you listed. I plan to read more about the connection between PH and Sjogren's. On my journey with all the other illnesses, sometimes it seems that things I learned long ago are coming full circle. So glad to communicate with you! Take care and hugs! Barbara

Glad you don't have all those AI diseases! One is certainly enough in my opinion. I had no clue I even had Sjogren's until I got pretty sick in 2020. My PCP initially thought I had a virus, but as it drug on, she began to suspect some kind of autoimmune condition. In less than a month I went from the picture of health to chronically ill. Sjogren's pretty much took over my body. Aside from the typical dryness issues associated with Sjogren's, I have developed inflammatory arthritis, Raynaud's, peripheral neuropathy/small fiber neuropathy, autonomic dysfunction, and of course, PAH. Obviously, Sjogren's has been with me for much longer than 3 years. Sneaker bugger! Ironically, without my Sjogren's diagnosis, PAH might not have been discovered until much later when the damage was much more severe.

Uh oh - typo in earlier post - should have been "so far I have NOT developed RA, lupus or scleroderma." Thankful for that of course.

Luck of the Irish!😅