Graves Ophthalmopathy

[SharonS]

I have been diagnosed with Graves disease in 2006 and started having the eye problems, bulging eyes, vision blurred, watery, red eyes. I was put on Prednisone in March of 2006, and had surgery on my right eye because my optic nerve was swelling and almost lost my vision in right eye in November 2007, they also just did surgery in March 08 on my eye lids to reduce the bulging eyes. I've had continued problems with watery eyes, so now they are suggesting I have blocked tear ducts and will need another procedure. In the meantime the retenia eye specialist has discouverd my scerola (white part of eye) is inflammed and they are suggeesting an alternative to Prednisone called Remicaid. Has any one taken this drug for Graves Opthalmopathy instead of Prednisone?

They keep telling me this will evenually burn out, but I'm wondering how long it will take.
SharonS

[jeremiah]

Did you get any answers? Did you try the Remicaid? What was the result. I am where you were a few months ago and am totally miserable. Thanks.

[SharonS]

Hi,
I did try the Remicaid treatment but my insurance would not pay for it and the cost was way expensive (out of pocket). If I would have had rhemitoid arthritis, or Krohn's disease they would pay for it but I don't, and they considered it experimental. The treatment did not seem to do anything for me, and I could not afford another treatment. So they now have me going to our University hosptial to another specialist and he has put me on Cellcept which is still expensive but at least my insurance company will pay for and it seems to be getting a little better, will not know for sure till I'm completely off the Prednisone. Hope you can find something that works. I'll keep you updated.

[jeremiah]

Thank you - I will bring this up with my physician tomorrow.