Hi Stephanie,
sounds like you're going through the wringer with our dumb disease. That's sad.
A couple of questions for you:
1. Do you see a doctor who specializes in Vasculitis/GPA/Wegener's? If not, you can find one near (hopefully) you by going to the Vasculitis Foundation's website. These docs will also consult with your local doc - often at no charge.
2. Has your doc treated you with rituximab? This is a newer treatment that has helped a lot of us. It's given only via infusion (IV), and it's frightfully expensive unless you have insurance that will cover it. The insurance company will have to give pre-authorization for this drug. The two infusions I had in 2013 cost almost $20,000 each. Fortunately, my out-of-pocket cost was only $20 each.
Most of the folks on here have had good results with minimal side effects.
Good luck and better health!!
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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