This is totally anecdotal, but I improved a lot with steroids actually. Of course that's not something you can stay on for too long without risking other serious problems, but they were the only thing that helped when I was in a fairly bad relapse some time back. When I went off them I managed to stay improved for quite some time also.
Prednisone is the best drug I've ever taken for this disease. I thought low dose 5mg/day was safe and wouldn't cause detrimental immune suppression allowing pathogen activation. Wrong! I got away with it for a while....until I didn't. I felt great for about 5-6 months on it, but then crashed into severe illness. I don't think the crash was from the increased exertion, I think it was viral activation. In fact, I'm sure of it. But I do believe my symptoms are more about excessive inflammation.
I do believe until the cause is found, some kind of
selective anti-inflammatory is the ticket for me. True this is not just typical autoimmunity for which I can take the current Rx immune suppressants safely. They are very efficacious, but also very unsafe. Nor can I take immune stimulants for the infections. If the right immune modulator out there, I haven't found it yet. No LDN or mushroom extracts for me either.
It seems the best solution will be if it's a treatable pathogen driving the immune disruption.