Hi :)
When I was on Plaquenil I had an eye exam at the local eye hospital every 6 months. When I quite (due to it causing tinnitus) The exam now happens once yearly.
Earlier this year I had a cataract fixed. The other eye needs fixing too and I thought they were going to take that into account today - but initially they said not.
I am one of the lucky ones - with little progression. In fact I had a Schirmer's test today with better readings than I had in 2011 (which is when the last one was done)
pleased with that - I was going to ask the doctor if they could just get SjS taken off my records. Had a negative lip biopsy and bloods, though indicating autoimmune condition - are not specific to SjS.
A nurse did the dry eye test before I saw the doc. I went in pleased that I had better results.
No - she wont take away the dx. Also she cant refer me for cataract surgery because the surface of one eye is inflamed. How come I didn't know that? Have I got so used to stinging eyes that it is simply normal? She's prescribed a tapering dose of steroid drops and a gel form of Cyclosporin to be administered at bedtime. She will see me in 3 months.
I asked her if the gel was the same as restasis. She said basically it is - but Restasis comes i drop form and is not commonly used in the UK. I can only get this gel froom the hospital though - my GP couldn't prescribe it. Have any of you used a restasis type gel? I have to put it in my eye and on my lids.
sorry this is a bit long - but thanks for listening.
Take care - Scottie :)