Hi my name is Nancy im 21 years of age I’m
New to lupus and rheumatoid arthritis I have been on methotrexate however it’s not working good enough so now I’ve been told today I will be on RITUXIMAB drip I’m so nervous can anyone who is on this drip contact me and let me know how there experience is going as I’m very worried thanks :)!
Hi nancyannexo, if you put rituximab into the search bar at the top of the page then all the past posts about it will come up.
I’m sure others will be along too to help you in a bit 😊
Please don't be nervous .. it doesn't hurt having the infusion and you are monitored and looked after very much! Your rheumy/biologics nurse should get you in for a good half hour or so to chat about it all. I felt the same five years ago and now I just keep hoping Rituximab continues to work for me. It has been the best med I have had so far.
Well stop worrying....it’a Breeze!
I have been having Rtx infusions since 2016 & there is really nothing to worry about. All the nurses are really well trained in inserting cannulas and you are checked very regularly....if you do feel a bit light headed during the first infusion.....just tell your nurse & she will slow the drip down...that is quite usual at the first infusion....from thereon jn it’s plain sailing.
The worst thing about it is the boredom ......so make sure you take a book your tablet your Kindle.....Some fruit .....anything that relaxes you. For some reason you always seem to feel cold so take a cardigan or throw to put around your shoulders.
Most clinics provide a sandwich lunch, tea & coffee and there is always plenty of water or squash to drink.If you have a favourite take some of your own squash/juice in with you.
I always arrive looking as if I’m going on a trip with all my reading material in a tote bag and clutching my blanket!
Good Luck...let us know how it goes.
Hello, I echo all that Aged Cone has said, it truly is nothing to worry about, except we all do for the first infusion. It is painless and there will be others in the room too, you will most probably smile at each other and maybe chat a little too. They check blood pressure, pulse etc every half hour and the nurses are always there. Your hospital letter should say whether lunch is supplied, my hospital does not, so I take food with me. They will supply drinks as it is five or six hours. Comfy chairs, take a book, and remember it should make you feel a lot better, not immediately as it takes time to kick in, but for me it has been amazing, I am so grateful for it. I hope it works well for you xx
Hello, I have had three rounds of it already and I agree with everything said above. Painless and you feel really well looked after by the nurses. Each round has worked better than the last, but it does take a few weeks to kick in. I always feel a bit flushed and fatigued for a day or two afterwards, but just take it easy for a bit and rest. Best wishes
Just to reassure you I felt exactly the same way before my first Retuximab. I've been having it yearly for 3 years now. No problem and it helps with my RA. I became allergic to Methotrexate so was taken off it instead given Sulphasizine many years ago. As part of your treatment you'll be given IV steroids before and after Retuximab. The steroids will give you a boost before Retux starts working which isn't instant.
You will have the first session then a week off when you'll need a blood test then exactly the same infusion of Retux. That's it. It probably sounds a bit overwhelming but it's not. Take some mags, books and a few treats to munch on. Good luck and think positive
I am nervous too, starting mine 1st week in june
I have been on this for 5 years with no side effects other than a headache on infusion day. I always take stuff to do like puzzles etc and a picnis as it can be a long day. Good luck
Hi I have been told I’m having this infusion, spoke to girl who had it done twice and it didn’t work. Some people say they can’t wait for next one , everyone different.
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