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Anyone have granulomatosis with polyangiitis (GPA) or Wegener's?
Autoimmune Diseases | Last Active: Mar 18, 2022 | Replies (60)Comment receiving replies
Since 3 years i have been diagnosed with Wegener desease it make me ill i had Ritumax and they had to stop half way because my body did not accept the whole drug.. i am 40 years old 😢❤️
Replies to "Since 3 years i have been diagnosed with Wegener desease it make me ill i had..."
@holland13 Welcome to Mayo Clinic Connect! I’m glad you found us. I, also, had a problem with Rituximab the first time I got it. I was monitored for a while in the infusion center and then they sent me to the ER. No long term affects, but I was taken off the drug. A few years went by and I kept telling the doctors that Rituxan helped me so much that I had to try again. So, I tried again with a more dilute solution and Benadryl prior. The infusion usually takes 1 hour, but, for me, it takes almost 3 hours. I feel fine after! Talk to your doctor and try again! Suggest that you do the desensitization protocol as in the wonderful article which @gently sent.
And try to relax! Have a good book or some music with you!
Will you talk to your doctor? I know you can do it!!
I tried Rituximab last year and although it didn't work well for me, I remember getting a horse dose of prednisone (about 100mg if I recall correctly) right beforehand to lessen the chances of a reaction and then the Rituxan was infused very slowly over 6 hours. I didn't have any issues with it during or after the infusion. Maybe the protocols have changed since you last had it?
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holland13, nearly all patients can be desensitized to Rituximab. https://hemonc.org/wiki/Rituximab_(Rituxan)_desensitization_protocol
Maybe the only nice thing about Wegener Disease is that people can go into remission. Well, and with treatment it won't shorten your life.
I hope you can get some good medical care.