Immunosuppression options....

[Guest guest]

I saw my opthal and neuro yesterday. My opthal said the cellcept is just not

helping my eyes enough and given the nausea and vomiting I would be best to

stop. He gave me steroid injections under both eyes and said I had three

options: 1. have steroid injections every 6 - 8 weeks, 2. have an infusion of

methylpred every 6 - 8 weeks, 3. try another immunosuppression.

My neuro was keen to try 2. or 3. because he is worried about the sarcoid in my

chest (he manages it because he found it! and it's one less doctor to see).

I have tried Methotrexate - which I vomited up immediately on taking it. So

stopped early. Imuran I was on for nearly a year but again it didn't help my

eyes enough and my neuro symptoms were still pretty strong. and Cellcept. Lasted

7 months but then the nausea and vomiting became too much. I don't have a great

stomach.

I would like to know what immunosuppresants others have been on, what side

effects and has it helped, especially if you have ocular sarcoid.

Thanks

Rach