Hi,
My name is Carly.
I was diagnosed with Wegener's Granulomatosis in Aug. 2009.
Had the textbook symptoms-started with an inner ear infection and spiraled downward in about a month and a half. Started around Father's day of 2009. Admitted to the hospital July 31st 2009 and spent 2 weeks in the hospital. My Dr.'s were great on working so fast to find out what I had. Just sucks that my treatments don't do so well. Started on Cytoxan while in the hospital but wasn't even on that for a month before my liver went into failure. So got pulled off that and was put on the max Pred dosage I could have outside of a hospital and confined to my house. Finally, my Rheuma Dr. went to a conference and found out about Rituxan and we requested permission from the insurance company since its not FDA approved for our condition. That is a hassle. But got approved and took my first round about Thanksgiving 2009 and finished right before X-mas. So I am on my 2nd Round of Rituxan,but on a daily reggime of pred and a couple others drugs. We also tried Methotrexate but that also caused my liver to fail. So my only saving grace right now is Rituxan.
I have also signed up to participate in a 5505: Longitudinal Protocol for Wegener's Granulomatosis and Microscopic Polyangitis. So I am awaiting to hear back from the Dr.'s Nurse for an appt to go to Johns Hopkins. If you would like to know more about the study, I would be more then happy to send you the info. The more that participate, the more they will hopefully find out about us, Weggies!
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