Problem is, you have to be severe enough even ON the meds. I was on pred, Cellcept and IVIG every 3 weeks and still a category 3B, which is pretty darn sick.

Please don't consider dropping the meds to "get bad enough" for the trial. You should just submit your records, and if/when you go for initial appt, they will ask you questions and base their decision on that.

I fully agree that if you can get off the meds, it is the best plan. I worry that insurance will deny the IVIG for me eventually, as it's already happening with some people. Insurance also has limits, and with you not even being 20 and looking at lifetime expenses...well, the decision is pretty much a no-brainer! Temporary hell for a life of relief!

I'm so jealous! Keep us posted.