Hi, My name is Karen but I also go by kaysee. I just found your group and I am so thankful. I was diagnosed with GPA this past April after 2 years of being ill with some strange symptons. I retired in June because it was too difficult to work and I needed to take care of ME. I had rituxan infusions in June/July with good results but the GPA flared up again the end of August and my kidney doctor sent me to the hospital concerned that my kidneys would fail. My rhuematologist said rituxan can only be given every 4 months, so instead they gave me pulse steroid infusions. I had 125 mg steroid infusions for three days which did nothing. The kidney function kept getting worse. I then had 500 mg steroid infusions for 3 days. I have been back on 30 mg of prednisone every day since. I will begin my second round of rituxan on Monday. At diagnosis my kidney function was only 25%, but after the first round of rituxan it increased to 50% and I am hoping to maintain that.
This has been a very scary ride for me and I am quite frustrated as my doctor says rituxan works 90% of the time. I did not expect a flare up so soon, nor did my doctor. While in the hospital I had a water leak in my home which resulted in a complete re-pipe of my home. Now I am dealing with a lot of sheetrock repair. It is not a good thing having walls open to the attic (dust, bugs, mold, etc.) when I have a compromised immune system, allergies and asthma. I am trying to stay positive and have faith that this second rituxan treatment holds it at bay so that I can get off the predisone. I've been on this stuff since the end of April except for a two week break after the first rituxan series.
Thanks for having this group. Karen
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