I have Wegener desease

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.

@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!!

becsbuddy, this answer is perfect. And you figured this out about Rituxan on your own. I'm impressed.

@gently Well, it all comes from experience, I don’t do well on meds (drugs). And I’m a nurse who’s been retired for too long. I’m just glad you put the article in!!

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?

@pm56 I’m sorry that it didn’t work so well for you. I don’t think there were any changes in the protocol, but I’d have to ask . Was last year’s dose the only one you received? I have received 3 doses so far, and each time i just pray like that it will work!
What other options has your doctor brought up?

I received the first one with a second one about 2 weeks later. Then it was supposed to be another one in 6 months. I tried weaning from the steroids after month 4 and my symptoms returned, and I had to go back on the steroid to control the flare and haven’t managed to get off them yet (another trial wean that started in January on Cosentyx very badly this time - less pain so it is doing better than any of the biologics to date, but significantly more weakness).

My rheumatologist has me seeing a neurologist just to ensure there’s nothing else going on and then we’ll reassess and hopefully add something to the Cosentyx and Methotrexate to see if I can lower the Medrol dose. It’s frustrating as the Medrol destroyed my corneas, and I see my blood sugar rising with each visit 🙁