@roxy1954 Hello. In additions to @johnbishop great ideas, you might also look into American Autoimmune Related Diseases Association, AARDA. They have lots of good information. I, too, have an unheard of autoimmune disease, Clippers. There are very few of us around. But we do have a Facebook page for sharing information. You might also check to see if there is a page for Churg-Strauss.
As I have found out, you have to become a researcher, a question-asker, and advocate! And try to establish a good, friendly relationship with your doctor. BTW, what kind of doctor are you seeing?