UK Keratoconus Self-Help and Support Association

I was diagnosed 8 years ago of having keratoconus, I wore an RGP lens in both eyes for the first year and had a penetrating keratoplasty in my left eye in 2002. My second graph was preformed in 2006 in my right, which was setting well for the first month and then became red and sore. There was vascularisation near many of the stitches and some deep vascularisation inferiorly. At this time I was taking Dexamethasone drops 0.1% 6 times a day. Due to the rejection in my right eye there was also signs of rejection in my left eye. We increased the Dexamethasone drops 0.1% to every hour in the right and every two hours in the left. There was no sign of improvement in the right eye after two weeks and my left eye became extremely hazy. After much deliberation I underwent a right full thickness transplant in September 2007 followed by immunosuppression with Mycophenolate 2g daily and Sirolimus 3mg daily. Within a month of surgery the graph underwent a severe rejection episode and this was in the face of systemic immunosuppression. Rejection has resulted in failure of the graph despite three post intravenous Methylprednisolone doses.

I have just return from the States where I have been seeing a corneal specialest who wants to try another penetrating keratoplasty on my right eye coupled with Prednisone initially at 60mg and also CellCept 1000mg twice a day as well as Neoral 100mg twice a day.

Has anybody else on this site had experience with rejection whilst on immunosuppression medication?

Jay, so sorry you've been having all these problems.
Hw is the left eye now?
Not had any experience of immunosuppressants - dexamethasone has caused me more than enough problems!
Did you find you were going down with every bug going round? - that's one problem with immunosuppressants.
DOn't know any of the names you mention - apart from dexa. and prednisone, which is the US name for prednisolone, another steroid like dexa but not so strong, IIRR. (Dunno about the methyl variety.)
Whatever you decide, I do hope it works out.
Rosemary

Jay

What a catalogue of disaster! I am so sorry that you have had such a poor experience.

The truth seems to be that with corneal grafts, the only plan 'B' is to keep repeating plan 'A' until, it works. Once we have committed to a graft the alternatives seem all to have been closed down, and it is for this reason that I delayed my first graft until I had nothing left to lose.

I know that the present decision you have to make will be hard, but you should know that you will remain in our thoughts.

All the best.

Andrew

Jay
I know it's no comfort to you that most rejections are successfully reversed and there's not many cases where the transplant fails despite treatment. But it does mean it's hard to find information about them. I may be wrong, but I think where a transplant has failed, the best chance of success for subsequent transplants is if tissue typing is done to get the best match (not normally needed for most transplants except for 'high risk' groups). Has that been suggested or discussed with you at any stage? You don't say how much useful vision you know have in your left eye. That presumably affects any decision you take. I'm sorry you're faced with such a hard decision. As Andrew says, our thoughts are with you.
Anne