Anyone diagnosed with Sarcoidosis?

[DanG]

Newbie here. My dry eye affects my right eye only, and is just one of my many gifts from a disease called Sarcoidosis. I'm looking for other members who also have this same disease, so we can swap war stories and possibly benefit each other. So...any of you out there afflicted with both dry eye and Sarcoidosis? Love to hear from you.

Glaucoma surgery, another gift from Sarcoidosis, left a weak spot on my right eye that has twice before ruptured due to nighttime abrasion from dry eye. When that happens, my eye loses pressure and collapses, and without immediate surgery, I would lose the eye. My dry eye has gotten so severe, repair surgery will no longer work. So, I'm hoping there's someone's out there who can offer me a little bit of their wisdom.

I have punctal plugs, use Restasis, take fish oil & flax, use eye drops throughout the day, and sleep with a humidifier. I apply warm compresses, and at bedtime use Muro 128 or some gel, and wear a moisture mask. I wake up every hour and a half in pain, and apply more gel. During the day I must keep my eye shut around any moving air, however slight. All this I do, and it's not enough. Advice anyone?

[Rebecca Petris]

Welcome Dan....

Newbie here. My dry eye affects my right eye only, and is just one of my many gifts from a disease called Sarcoidosis. I'm looking for other members who also have this same disease, so we can swap war stories and possibly benefit each other. So...any of you out there afflicted with both dry eye and Sarcoidosis? Love to hear from you.

I searched the forum and didn't find anyone - yet - but we may have members or 'lurkers' who will come out of the woodwork. Meantime I poked around a little looking for other relevant forums. There is a sarcoidosis forum at DailyStrength.org . I couldn't see it without joining it but maybe there will be some people there with some similar experiences. Meantime... for any dry eye related stuff, we're here and I hope we can help somehow.

Off topic a sec - for other DEZ readers - there is also a dry eye group set up at dailystrength.org. Small, but maybe we can have more of an impact by joining and getting more posting going on. So many of you here are dry eye veterans/experts... I'm sure info sharing would be appreciated. In other forums people are often missing the most basic info about dry eye.

During the day I must keep my eye shut around any moving air, however slight.

At that level, I think that moisture chambers, and failing that sclerals. would be the most likely to help.