Phil, read your message. I also do not have this didease. My husband does. He has been on prednisone for 2 years now. It has helped with the original symptoms but has lowered his immune system so much that he picks up other infections that are very rare & always a mystery to the doctors. Every time he tries to wean himself off the prednisone he gets down to about 20 mg every other day but then gets sick with some other infection/sickness. He was pretty healthy before this so we don't understand why this just doesn't get any better. I guess my advice to you is to ask your dr about other options if any are available and most importantly ask what you can do to try and protect your immune system as much as possible. Hang in there & good luck!