I was misdiagnosed several times before one doctor finally told me the shedding, swelling and other severe physical issues I was having were SJS. I'm on my fourth "shed," and have stopped the prednisone, in order to try to let my body handle what's left of it. It was extremely frightening and continues to "morph" into all kinds of different rashes and other issues. I had swelling and peeling of skin from hands and feet, as well--even my palms and the bottoms of my feet were involved. I was amazed by that.

My eyes are fine. But over time, the prednisone raised my blood sugar to diabetic levels and did other damage, so I'm sticking to my guns. I do use a corticosteroid ointment right now that is helping me deal with what I hope is the last round of rashes and shedding. I use Benadryl for particularly itchy days, and have Doxepin, a sedative, to help me reduce tension and get some sleep. Otherwise...no other meds. I've been dealing with this for four months, and will visit Mayo in Arizona this week to try to find out more about what I can do for this thing. It has been the greatest ordeal of my life!