RW....did you ever have your complement levels checked?
So I just saw a super interesting dr. Guy was recommended to me by a friend. He's a neurological autoimmune specialist.
He looked at my bloodwork and thinks that my problem is that my complement system is over-activated. I have chronically high c1q binding assay, low c4 (so its being used up) and high IgG 1 subclass (which is complement activating).
He says that instead of trying to suppress my whole immune system, we should be targeting the complement. There's a drug called Soliris which he says could fix me in as little as 4 weeks with few side effects. The problem is that its the most expensive drug in america. $500k/year