Anyone out there with this, please respond, there is so little information on this disease, I am devastated because I also have several other autoimmune diseases, but now my doctors have told me that I do have this and its considered a separate disease, they are starting me on cellcept and increasing my prednisone today because i have been in such a terrible flare. I would love to talk with someone else that has this.
thank you for listening!
Hugs
Mary