Rituximab Reaction

[madonbrew]

Hey guys, on Thursday I went for my first (1of2) Rituximab infusions...although I've had two rounds before. I have it for my IgG4 disease which has affected my pancreas. Anyway, it didn't go quite to plan. 😪

I had the pre-meds and was then started on the Ritux at a slow rate. All was fine. Then they upped the speed and I was still fine. They upped it again and suddenly I started feeling really bunged up and my nose running, then I couldn't breathe. The curtains were pulled around me,I was put on a bed...was previously in a chair, then had about 10 staff doing stuff. The icu Dr came down which totally freaked me out. I had 2 nebs,oxygen, lots of vent inhaler, iv pred and antihistamine and goodness knows what else. They then had to take me from one part of the hospital to a&e by ambulance . There they said I'd gotten into a highly altered state of anxiety, and I was later allowed home.

I guess that means no more Rituximab now for me 😪 My consultant is going to go some research to see what other options there are for me. Unfortunately I react really severely to prednisone in the long term and azathioprine too. I feel a bit overwhelmed by it all today and a bit anxious about how they'll now treat my IgG4 disease.

Sorry for the waffly message. I just needed to get it out. Got an appointment with gastro Dr this week.

Thanks for reading!

Dee 😊

[bravo35]

Hi! Thanks for posting about your experience with Rituximab related to your IgG4-RD. Check out this link if you are interested in a research opportunity that could potentially lead to preventing flares in individuals with IgG4-RD app.patientwing.com/campaig... If eligible you may be seen by IgG4-RD experts, may receive study-related medical treatment and help advance IgG4-RD research!

[madonbrew Pioneer in reply to bravo35]

Hi Bravo,Thanks for your message. I'm based in the UK. I'm interested to know how you heard about this research?

[bravo35 in reply to madonbrew]

Great question! I work at PatientWing and we are sharing information about this IgG4-RD study for people who may be interested. We are working with a sponsor on this study. The study is unfortunately not available in the UK yet but it will be in the coming months. We will reach back out to you once sites become available in the UK. Please feel free to reach out with any questions in the meantime. Thank you!