@liztbnr Oh, gracious, I can’t believe that you are unable to find a doctor! That’s terrible! Here is a link to an organization that collects info/resources on genetic and rare diseases. They have a section on finding a doctor, so please try calling them.
https://rarediseases.info.nih.gov/contact/
And you’ve been on prednisone all these years. A good doctor will help you taper off the prednisone and get you on a safe immunosuppressant . I have my ups and downs, but really, I’ doing pretty well on Myfortic, an immunosuppressant, and lo dose prednisone.
I’ll try to send you some articles on Clippers. This article is really excellent. https://nn.neurology.org/content/5/3/e448. Read it and let me know what you think.
Do you have a plan going forward?