Neoral / Cyclosporine

Is anyone on it? Can you tell me your experiences with it?

I'm Linda and I have a neuromuscular autoimmune disease called myasthenia gravis. I've had it for 6 years, and have tried high dose prednisone, IVIG, Immuran and Cellcept to try to shut down my immune system with little effect. The Dr.s have a terrible time trying to get me better as my body doesn't respond well to any of their treatments so far. I've just had a week of plasma exchange treatments and now the neuro is planning to get me back on prednisone 125mg/day (yuck, I hate what prednisone does to me) and to start Neoral.

I'm a RN, and I'm familiar with cyclosporine, but would like to hear personal experiences. If you'd rather d-mail me, that's OK too.

I'm usually on the Canadian forum and occasionally in the brugmansia forum, but I've been lurking a bit here. I know it's way past time to start dieting, but it's got to be done for real now, so that's a huge prospect for me, but I'll do my best, one day at a time!

Linda in Victoria BC