hi everybody. sjogren confirmed after my second lip biopsy. blood tests are border line, just anti ana are 1/160 and rheuma test slightly positive, 38.
i had a flare that lasted five months two years ago then i went to complete remission for two years and then dryness of eyes and mouth started again and lasted five months. then again my eyes were ok and my mouth also. i could eat almost everything and swallow pills for two months and now yesterday my eyes went dry and my mouth also from one hour to the other, really all of a sudden. does this happened to somebody else? thanks
Yep. Dryness issues wax and wane with me constantly.
My eyes and mouth will get worse then somewhat better, then worse again ? Sjogren's flares like lupus and other rheumatic diseases.
Hi Blue,
It's been awhile. Don't think I realized your symptoms are still coming and going as you describe. I know you cannot take the pilocarpine type meds. Have you been able to put your hands on the Biotene gel?? It helps during the night immensely. The symptoms we have with SjS will wax and wane...more on a daily basis to my way of thinking. Looking back, mine must have since I had all these symptoms over decades...but they didn't become chronic until months before diagnosis. Looking back if those symptoms had been chronic, surely I would have mentioned them earlier.
As it is now, I stay on top of all of it with meds. While that doesn't help the disease itself, it certainly improves my day to day comfort level. I only wish you were able to take the dry mouth meds. Heavy sigh.
Hope you are having a good day. Has your book been published yet?
c3
Hi Blue,
I'm one who thinks my dryness has stayed about the same for years. Except when I am sick or having a flare. And then the dryness is never the worst of my troubles, but it does seem worse.
i'm so sorry that you are suffering and can't take one of the medications. I would be lost without pilocarpine.
Hugs, Elaine
Unfortunately, the changing of dryness might not be that unusual. My mouth dryness comes and goes. It's usually my fault because I've forgotten to take my Evoxac, although, the dryness varied before I took any medication. You can't take the pilocarpine but have you tried Evoxac? Pilocarpine made my heart race. Don't have the severity of that problem with the Evoxac. Hope your dryness ends soon.
thanks everyone for your kind answers.
ccci have biotene gel thanks, its great for the night.
i cannot take pilocarpine or evoxac or any of those, im afraid. ill speak again with my cardio about that