Hi Sarah,
Hope you're doing well! I know this is a very old thread, but I'll give it a shot. I'm highly interested in hearing how everything turned out for you, and if you managed to keep your medical? I'm in the same situation and got diagnosed with SLE six months ago. Still waiting for the verdict from my AME, trying to collect as much information as possible to try and build up a "case". I'm told it will take another six months until a final decision can be made. I've managed to find a short article in the Federal Air Surgeon’s Medical Bulletin about a fellow pilot who managed to keep his medical class 1, but that's basically everything I've been able to find.
Take care!
Best,
Isac