Hi guys
Sorry not been public on here for a while. Had first Rituximab on 18th Jan abs second 1st Feb. After second I’ve been feeling awful. Really nauseous, headaches, tired. I’ve told Guys and they never called me back!!! They then emailed saying my consultant away and to go to local a&e 😞. I’m sweating a lot, can hardly eat as feel sick. I’d appreciate some advise you lovely lot xxx
Hi wolf. Sorry you're having such bad side effects. I can't offer any advice but my rheumatologist is referring me for this also. I dont know what to expect 🙄
Hi, I am sorry you are feeling so awful Wolf, I have no experience of Rituximab, but list of side effects do include what you are experiencing. I would at least ring 111 for further advice if you are feel very unwell. Hope you feel better very soon.
Hi Wolf , i had a similar experience after first set of rituximab, had terrible gastritis and i felt as if i had the flu . It took a week to settle, I spoke to the rheumy nurse and she thought maybe the steroid part upset my stomach. The rheumy decided that I should get the infusion at a slower rate to see if it helped and i coped much better after that, i ask to get at a slow rate each time now . I feel so much better on rituximab, i hope you have the same results, best wishes 🌸
Thanks. My second dose now a week ago. This surely isn’t right xx
Try and get an opportunity to discuss it with your rheumy nurse, maybe a slower rate would help you ? I haven’t had the same problems since , good luck x
Sorry to hear that you are feeling so rough. Given that you feel nauseated, have a headache and are sweating a lot you might be losing electrolytes. If it was me I would take some rehydration sachets such as dioralyte and then I'd either call 111 or follow the advice from Guys and get yourself to A&E.
I get this way after a lidocaine infusion for about three weeks and I find the rehydration stuff really helps. But it sounds like they've already given you advice. The only other thing to try is to see the GP as an emergency who I'm sure could get advice from your local hospital?
Feel better soon!
Hello wolf, sorry you feel so yuckky. I was so sleepy and flu-like with mine as well. And as weathervane suggested, the 100mg pred dose surely has effects. If you’re still unwell after a week definitely follow up on it. I was offered a slowing of the transfusion if required but was ok...until the end of the day.
Hopefully you’re starting to pick up now. All the best
Penelope
Hi Wolf. I've just had my second set of Rituxamab ( first 2 infusions last year) I had no side effects after first set. But I do have headaches now after this one had it 3 weeks ago and got mouth ulcers. If you are unwell and have a temperature, then see your GP or go to A&E. That was what I was told to do if have a temperature. Good luck - btw - flare ups all in remission
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