Rituximab

[lucindaross]

I went for my first Rituximab infusion on friday and had an allergic reaction to it? has this happened to anyone else? my vasculitis is now flaring up, pressumably due to the reaction. Im feeling quite down as I was expecting it to work.

[LynneJ Vasculitis UK Volunteer]

I don't have personal experience but while I was having cyclo infusions there was a lady next to me who had a reaction. The nurses gave her anti histamines and slowed the infusion right down. She was there for many hours. They did tell her it was quite common in the first infusion and becomes less likely in later ones.

I am sure there will be people here who will be able to give you more from their own experience.

Maybe it takes a while to work.

Are you due to see your specialist soon? If it is starting to flare perhaps you should get in contact with the hospital.

Good luck

Lynne

[lucindaross]

hi lynne,

yeah im going to try again in jan....theyve mentioned putting me on the lower dose and admitting me over night to keep their eye on me. was just so upsetting especially the flare up afterwards. i was just so looking forward to feeling better x

[sar1980]

Hi! I had rituxumab with no problems, but it did nothing for me. I then tried cyclophosphamide, but 2 days after my 3rd dose came out all over in a rash and felt generally terrible and sick. My markers had increased, So had 1 Week with nothing but preds which seemed scary, just so everything would get out of my system, then started on methotrexate. This has been the best thing so far! (touch wood!!!!). I hope they manage to get you sorted soon, but don't be disheartened, there will be something that suits you! Xxx

[DevonLottie]

Hi, I've not had an adverse reaction to rituximab but was told that it can take up to 3months after the infusion to see any postive effects so don't be too disappointed yet, give it time to work. I do hope things improve for you soon.

[John_Mills Volunteer]

RTX can take a while to kick in ..having an allergy reaction is something else... the consultants don't usually give up immediately unless the allergy reaction is bad. Rituximab seems to be the magic bullet for a great number of people with Vasculitis but I am afraid not everyone.. .. we know of a few people who cannot tolerate RTX and an alternative is usually found... try not to be too disappointed as Devon Lottie says see how it goes next time... keep us posted ..

take care

Susan

[wooddustaffected]

Hi, I had an allergic reaction the first time I had Rituximab they gave me an injection to stop the reaction. It started as a just a tickle in my throat and got worse and could feel my thoat tightening up but they saw to it quickly and I was fine. The Consultant I had at the time seemed to think it should work straight away (it had cancelled all the B cells but I wasn't feeling better. I don't think he knew too much about it either) and wouldn't let me have more than 2 infusions even though they had the funding for it, which I think was wrong. We can't get it here for WG now only RA. Don't give up though maybe try it again if they'll allow it. Once your body gets used to it maybe you won't have the allergic reaction. It does take time to take affect though and sadly it doesn't work for everyone but is good for many. Take care,