sally
I was diagnosed with Churg-Strauss 2-1/2 years ago. My doctor, who is a pretty nice guy, has been unable to help me link up with any other people diagnosed with this same illness. My biggest question has been, "What can I expect 5 or 10 years down the road?" I'm currently taking daily prednisone and a weekly subQ injection of methatrexate (which makes me pretty miserable for 1-2 days afterward). All in all, I'm doing well. I've regained the function of my hands and feet (although the numbness and tingling from initial nerve damage remains) and I have many fewer asthmatic episodes. I've turned into quite an athlete as a way to counter the physical limitations I suffered early on in the disease process. I've pretty much given up on the idea that I'll ever be prednisone-free -- I've already tried that a few times with disastrous results... So, what is it like for you, 10 years later. I'm very interested to hear what your experience has been, how you cope, what alternative treatments you've tried, etc. I've experimented with a few alternative remedies that reminded me of a very funny episode of Seinfeld where George turns purple... Most days, I don't think about my medical oddity at all. But the minute I get a cold/sinus infection, I know another round of severe symptoms isn't far off. And I always wonder about the long-term implications of the drugs I'm taking. Hope to hear from you soon.