Living with Wegener's Vasculitis
in Health ·
Sandra Vaughn50 said:I don't think there's much you can do to control it yourself. The disease follows its own path—something that really needs to be managed with medication.
Wegener's is pretty stubborn, too, and despite therapy, relapses happen all the time.
The combination of mycophenolate and prednisone seems a bit odd to me, honestly.
Have you already undergone cyclophosphamide therapy (Endotoxin, Sandimmun...)?
If standard treatment isn't cutting it, there's Rituximab (Mabthera)—it's a monoclonal antibody against CD20 lymphocytes that can successfully treat Wegener's.
How are your kidneys doing? Any proteinuria?
I used Endotoxin at the start of the illness—just one round of therapy.
Then Mabthera three times in 2013 and three times in 2014. After that, I "managed" to hold out for 10 months in 2013 without a relapse, and since 2014, it's been 12 months.
So, I actually disagree with you there... because from my experience, if I have too many "rough" days in a row—physical exhaustion, lack of sleep, that feeling of "inflammation"—and if I don't "hit the brakes" myself... slow down, rest, recover... then a flare-up happens. That’s the only pattern I see in my own body... and stress! Stress absolutely kills me. I am 10000% certain that one of my relapses was triggered by stress.
My CRP levels are always above the minimum... they never stay steady for me.
Diet? Anti-inflammatory diet? Anyone found anything that actually works?