Rituximab

[Bluepegasus]

I'm about to have my first RTX infusion and am apprehensive. Could anyone tell me what to expect please?

[KittyJ]

if you put that into the search box lots of past posts about it will come up

[AgedCrone]

It will go fine..just make sure your wear something that you can go to the loo easily…you will need to be able to wheel the dripstand & pull your pants up & down with one hand..l.…..once that is sorted ..everything falls into place.

Also take something to help pass the time..book iPad , crossword. They usually provide lunch & plenty if tea & coffee.take a jumper too…you often feel chilly.

The first infusion is always long as the nurses are assessing what speed to set it……once that is sorted out treatments move faster….my first took nearly seven hours….now it takes just 4hrs.

Good luck with…if it suits you it really is the most convenient treatment.

[Bluepegasus in reply to AgedCrone]

Thank you so much Aged Crone (I’m sure you’re not). That’s really helpful and very comforting. Thank you for taking time to reply. Thank you too Kitty J - I e looked at some of the other posts now.

[RAat13]

I've been on this for a year, had it yesterday. For me, it has given me my life back. I'm in remission after 22 years.The doses are long, but The first dose is very long, but necessary, mine took 7 hours, now I'm dome and home within 5 hours, you'll have pre-meds half an hour before, Steroids and Antihistamines plus paracetamol. These can make you sleepy so if a bed is available ask for it, my lovely ladies have it all set up for me when I get there ☺️

Take snacks, things to do and headphones.. I usually fall asleep for a few hours.

Afterwards, make sure you have someone to drive you home and just take it easy, you may feel tired for a few days after.

I get home and lay straight on my bed.

You will be extremely vulnerable to illnesses so keep away from people who are ill, I caught a cold on mothers day that turned into a chest infection by the next day 😭

I hope this works for you, it's a life changer!❤️

[Akaka]

Hi, as the others have said will be fine, pre meds first and then they slowly do the infusion. I was worried how I’d be after but I was fine, not even tired, but that could be because I’d had such a lazy day 🤣! My trust only provided tea, coffee and biscuits so I’d check before going so you can take some lunch if need be. I’m going for a blood test as I don’t seem to have improved and my last knee injection didn’t work either. I was so hoping this was the ‘one’ as AC says it is so convenient. The blood test will show if it has worked at all, if not back to the drawing board! I hope it works for you as it has been a game changer for a lot of people.

[AgedCrone in reply to Akaka]

Obviously talk to your rheumy team….but I had an occasion when the infusion didn’t work.l...but rheumy said keep going & the next one took fine.

I also had one occasion when it worked too well & knocked out all the B cells too fast…..I felt bad for a week or two ..but once again the next infusion went well.

My thought when rheumy said keep going…..was it suits me so well & I feel good on it, I’m willing to give it another go…& I am really glad I did.

I have been on it for 8 years now…& manage to go 9/12 months between infusions.

[Akaka in reply to AgedCrone]

I did speak to them last week and have just been for a blood test today. Apparently the blood test will show if it has been working or not. It’s now just a waiting game to see what happens next, I’ve certainly got pain coming back in my ankles, wrists etc. As you say if it works it’s great, no pills or injections to take, I did hear that someone had gone 5 years without the need for another infusion - I can only dream of that..

[pammi2 in reply to Akaka]

have you had any side effects do you catch more infectios?

[Akaka in reply to pammi2]

Hi, I had no side effects and did not get any infections not even a cold.

[pammi2 in reply to Akaka]

how long have you been on it, what is actually in the drip they put inside your body?

[Akaka in reply to pammi2]

I just had the 2 infusions 2 weeks apart. It goes in through a cannula very slowly . I’ve had the blood test since showing that although the Rituximab did what it was supposed to it didn’t help me unfortunately. So I’m now on a JAK, well actually my second one as I had terrible stomach and nausea problems with the first one. Only just started today so 🤞

[Gnarli]

I have to admit to being frightened at the thought of Rituximab. However, thanks to the wonderful people at the unit, it was a breeze. Pre-meds first (obvs) then the infusion itself. Walzing around with the drip stand was an education but no probs. No tiredness or anything else. I have just been told that the RA is currently 'inactive'. Hooray!

[pammi2 in reply to Gnarli]

ello what is the dosage you have on your first transfusion and the one that follows? dont they use this drug to treat cancer?

[Gnarli in reply to pammi2]

Unfortunately, the dose is individually tailored for each patient so what I received might not be the same for you. Yes, I understand that Rituximab can be used to treat cancer but at much much higher amounts than are given to us with RA. Something like 100 times more. I hope this helps.

[ElizabethW in reply to pammi2]

Yes this drug can be part of cancer treatment. I finished 6 chemo treatments for lymphoma in late february 2024. I had 6 infusions of rituximab along with 4 other drugs over the course of 4 months. (fingers crossed that remission from the lymphoma lasts.) Not sure what the dose was, but I was taken off Rinvoq before starting the chemo and now, 9 months after finishing, and not taking any RA drugs, my RA (longstanding over 40 years) still seems to be under control. I have discussed with my rheumatologist the possibility of using rituximab as my RA treatment in future.

[Salsalady]

hopefully you will be fine. The first is the longest infusion, about 6-8 hours the staff were amazing kept me informed at each stage, I took snacks & headphones, fell asleep during the process!!! The next was even quicker, truly bless had no side effects & after 4 six monthly sessions, consistent of two infusions each time, I have been in remission for 18 months

[Otto11]

Hi I used to be on Rituximab & it’s a long day. I made some good friends chatting to others. Definitely take something to pass the time book magazine or I pad. I don’t have very good veins so one time I had to sit with my arms in a bucket of hot water before they could get a cannula in so drink plenty of water beforehand if you have similar veins. I think a couple of times my BP went a bit low so they adjust the speed of the drip. I think the longest time was around 7 hours. I don’t remember any side effects but was really tired after so try to have someone pick you up. Good luck.

[pammi2 in reply to Otto11]

so can i ask how long you had ra, how bad it was, what was your crp score and what dosage of rtx you took?

[Bluepegasus]

Thank you all very much for your replies. It helps a lot to read about your experiences and especially to hear that you've mostly benefitted a lot from the infusions. Best wishes to you all and thanks again.

[whitedog]

Had my first round of it in July.

Nurses all lovely and monitor you regularly. I took snacks but the tea lady brought biscuits, sandwiches and buns. I was by a window both times and got internet service, thankfully, so could message out and go online.

Felt perfectly fine all through the first one and drove home with no issue.

Similar two weeks later, though that time the antihistamine wiped me out and I fell asleep in the chair (never bothered getting on the bed).

And later in the evening developed a pounding headache.

Otherwise fine, though I haven't noticed any improvement yet.

[Bluepegasus]

Thank you whitedog, that's really helpful, I'm a bit apprehensive but you all seem to have done well with it. Best wishes and thanks again.

[Bookworm55]

I had my first 2 infusions in June and July this year. All went well except that the first one was stopped near the end as my temperature supposedly went up. No other symptoms of a raised temperature. The thing was I’d been listening to an audio book with my Bluetooth earbuds and I’m sure that had caused my ear temperature to go up. For the second one I was very careful and used one ear for the earbud and the other for them to check my temperature- no problems!