Case Study for Rituximab needed. "URGENTLY"

[Suzym2u]

If your experience of being treated with Rituximab has been really good and you would like to share your experience. We would like to hear from you Urgently (in the next 48hrs please)

Please contact John Mills (Chairman of Vasculitis UK) [e-mail]

Thank you

Susan

[Kenneth]

John,

I had a 2 year course of Rytuximab which started in December 2009. I am pleased to say that I never suffered any side effects whatsoever throughout the whole treatment, in fact, apart from the great benefit of putting my Wegeners into remission, I didn't even know that my body was having such a drug. I had my last infusion in December 2011 & am still in remission. I asked Dr. Jayne what would happen when I do inevitably come out of remission? He told me that, because I had reacted to Rituximab so well, he would expect me to go back into remission with just 1 more infusion. The only drug that I still take, is Co-trimoxazole, 3 times a week. I believe that after all the problems that I have suffered with Wegerners since 1994, I am one of the lucky ones because I feel so well & still at work. I am 65 this year but have no intentions of retiring.

[EbonyWillow]

I had my first infusions of Rituximab in June/July 2013, and have been told that I will receive another this month,but no date yet. Methotrexate had simply stopped working after about 9 years,and even when it was apparently doing its job, I still had flares about twice a year, and this required large doses of Prednisolone to return to remission. Along with being ineffective, increasing doses of Methotrexate had also begun to make me feel quite unwell. Since RTX I have had no flares, no oral steroids and no other drugs, so for me, it has been a success. There were no significant side effects during or after infusion, and the only drawback so far has been mild cold like symptoms, and a loss of sense of smell, which may be caused by having to use a steroid nasal spray to control the polyps that seem to come with Churg Strauss Syndrome. I have good energy levels, and feel well.

[mumu]

i had rituximab late 2013 for a reacurrence of wagners vasculitus, and before that 7years previously when i was first diagnosed with acute renal failure caused by vasculitus. both times it have stopped it in its destructive path, at the moment i am struggling to overcome a stomach bug which has been ongoing since a month or so after the rituximab but a small price to pay. thank god for rituximab

[Suzym2u Moderator Vasculitis UK]

Thank you so much for all your replies. If you would like to put your name forward we will explain by email. Please email John [e-mail]

Thank you

Susan