Hi everyone,
I am happy to have found this site and find all of you here. I am 54 and have had Wegeners for 41 years. I was originally misdiagnosed when I was 13 with Henoch Scholein Purpura. Once the WG/GPA was diagnosed, I took oral Cytoxan for a year and the WG/GAP went into remission. I have had a kidney transplant for 25 years and had one for 10 before that. Like many of us with a long-standing chronic illness, my medical history is super-complicated. That being said, I live a very full life and feel blessed to be living it!!!!!

One of the things that is so amazing is to see how medicine has changed for the better in those 41 years!! When I first got sick in 1978, the ANCA test, didn't even exist! Even Cytoxan wasn't being used much then and so the steroids, Imuran and 4 years of dialysis helped push me along long enough that I was able to be helped by the ANCA and Cytoxan in 1992. Now Rituxan seems like a miracle drug compared to Cytoxan.

Four years ago, 21 years in to my transplant, my nephrologist lowered my transplant drugs. I was so happy and felt great. Her thought was that I didn't need as much immunosuppression as I got older and less Neoral would be better for me in the long run. About a year later, I started having ongoing sinus and ear issues that have gotten progressively worse. I have always had sinus crusting and a deviated septum but it was all manageable. In the last 3 years I have had over 30 doctor appointments (with Primary Care, ENT, Rheum) about my sinuses and ears. I have had to be the one pointing out that this is a flare, demanding treatment and it has been a difficult long road. I was not seeing a Rheum regularly because, my old Neph used to managed everything. Nowadays, the new younger Nephs only do kidney stuff and won't hear much about my sinuses. My neph forced me to get a Primary Care doc and see my ENT, which I think only diluted how many issues I was having.

Anyway, I am likely starting Rituxan in 12 days. I wish I could get it tomorrow. My nose is so painful. My steroids have been increased to 20mg/day and I am pretty miserable, worrying that my nose will cave in while I sleep! Yikes! The bleeding has slowed but I have granulomas in my nose, it's completely blocked and super-painful. Just hoping I can go 12 days. Plan is to see a top Vasculitis Specialist in 10 days just to get a second opinion and then be ready for the infusion 2 days later.

I am worried about having an allergic reaction, simply because I am the type of person who is allergic to cats, horses, some meds, etc. Does that matter?? Praying I don't react and it works! Feeling grateful that I can take it instead of the Cytoxan. Thanks for listening everyone!

Be well,

Kim