@becsbuddy , as I mentioned before, I’m from Ukraine and I don’t yet have a doctor in the U.S. In Ukraine, this disease is extremely rare(I`m first or second), and doctors know very little about it. For example, I was told that I would need lifelong prednisone therapy. But while on prednisone, I began to gain weight, my muscle mass was turning into fat, and I realized that prednisone was killing me, just more slowly. So I wanted to find a way out.

I tried several times before, but without success. Then, to be honest, with the help of AI as a guide, I built a plan for slowly tapering corticosteroids — and I succeeded. Previously, when tapering down to 16 mg of prednisone, I would suddenly experience disease symptoms such as diplopia and ataxia.

At this point, I still need to find my doctor here in the U.S. If you might be able to recommend someone in the Bay Area(California), I would be very grateful. But in short, the doctors in Ukraine I’ve spoken with say that this is truly an interesting experience, a unique case. And it’s important to maintain my remission for at least six months before any conclusions can be drawn.

Also, I see that in the U.S. this disease is much more researched, and that many of you are taking more than just corticosteroids.