Saw the Eye doc

[Wal]

So, I haven't been formally diagnosed with SS. All my blood work has been normal this year. No lip biopsy because I'm concerned it won't show anything and then I'll be in more discomfort with no answers. My dry mouth has greatly improved over the last 6 months. It's there but very mild and manageable. However, my eyes are horrible and I now have vaginal dryness. I recently saw a rheum who totally blew me off. Yesterday I saw my eye doc again because my eyes are flaring worse than ever. Not a second goes by in the day that I'm not thinking about my eyes. And it's not even that cold here in the South! Anyways, she was shocked I was blown goby the rheumy and told me to find a new doctor. She said all my symptoms point to SS. If not SS, she thinks my hormones are off for what's normal for me not standard testing. Anyways, my TBUT was 3-4 seconds which is bad. I have MGD and a decrease in tear production. I'm starting Xiidra tomorrow plus a steroid drop. I'm feeling really down about it all. I'm only 37 and haven't hit menopause yet. I'm scared of what's to come. Has anyone tried Xiidra and steroid drops? Do they help?

[Kadiddle]

I don't see a Rheumy until December 8th, so my diagnosis of SjS is not OFFICIAL yet.
However, I am on Xiidra, and I wish I could tell you it's working. I don't know I have problems until the damage is pretty severe. I have only been on it for about 8 weeks. But I am being treated for corneal ulcers with placental membrane placement. It healed one eye, and the other eye is on day 4 with the membrane. I will get it removed on Monday and hope it does the trick.
So...I can't tell you if Xiidra works because I haven't been without ulcers and erosions yet.
As far as steroid drops, I know they help, but then again. it didn't cure the ulcers.
So...I don't think I'm much help....Sorry.

[cccourt1942]

As i understood the steroid drops (as Rxed for me) they are for comfort...not cure.
ccc

[Kadiddle]

Hi CCCourt,

Actually the steroids are for inflammation and when inflammation decreases, the chances for healing greatly increases.

[cccourt1942]

I'm sorry I left out that specification Kadiddie.  Thx for stating that.  I've had an inflammatory disease so long, been treated by Medrol packs then prednisone for so long, I think everyone know that SjS and concomitant conditions are systemic and a result of inflammation.
c3

[Kadiddle]

No worries. I'm sure you have more insight into this then I do. I am still a newbie. But unfortunately, I think I will learn firsthand more every day.