Donna
Apparently your diagnosis is one of those catch-all latin names used when doctors don't know what's wrong with you. Tell your doctor you want to be referred to a rheumatologist - - this is a very complex field that a general practitioner cannot be expected to fully know. There's a medicine out there that has to be better for your overall health than steroids. Good luck and don't give up - - it can take years for a proper diagnosis.