Rituximab

[Barbs52]

hello all, I would like to ask if anyone has any experience taking Rituximab and if so how well did you tolerate it. Thanks 🙏

[Teaspoon13]

Morning

I have be on Rituximab for 4 years now

Works very well for me, no side affects just a bit tierd for a few days after

Tips :

Wear lose fitting cloths - if you need to go to the loo when haveing this treatment it can be a struggle if you have zips etc to undo

Layers - your body temp goes up and down so wear layers to keep warm

Bring things to do - Book, i-pad - knitting anything to pass the time, you could be in the unit for up to 8 hours

Hope it goes well for you

x

[Barbs52 in reply to Teaspoon13]

thank you Teaspoon I appreciate your positive reply and kind tips for a comfortable infusion 🌹

[Alexia01]

Hi there,

I had my first Rituximab infusion in January. Unfortunately, it wasn’t straightforward for me. A few hours in, I started reacting—rash, itching, increased temperature and heart rate. We paused the infusion, I was given steroids and more antihistamines, and then we restarted at the lowest rate. I could tolerate it at that speed, but it took 10 hours, so I had to stay overnight.

My second infusion was two weeks later, and sadly it didn’t go well. The plan was to run it at the lowest rate over 24 hours, but even then, I had a strong reaction after just a couple of hours and they had to stop the treatment altogether.

I just had my rheumatology review last week, and my doctor told me I should have been given prednisolone between the two treatments to help my body tolerate the second dose. He believes I might have managed it better with that.

Apparently, it’s quite common to have some reaction to the first infusion—usually it’s manageable with a break, hydrocortisone, and antihistamines. But my advice would be: if you do react during your first infusion, make sure you get some steroids to take home to prepare your body for the second. That might make it easier next time.

On the positive side, it’s been almost three months now since the first dose, and even though I only had half the treatment, I am starting to feel better.

I really hope it goes smoothly for you. I think I was just unlucky—so many people I know have had Rituximab with no problems at all, and they say it’s the best thing they’ve ever done.

Best of luck xx

[Barbs52 in reply to Alexia01]

dear Alexia thank you so much for your reply and your detailed infusion that must have been alarming for you. I have read that the first infusion can be troublesome and that made me ask on this site for those of you who have had an experience. I’m glad though that you are doing better since receiving your treatment that’s a positive. I’ve had chemotherapy infusions and have many allergies but fingers crossed all will be okay with this treatment. Thank you once again 🌹

[MandiS]

Hello had my 1st infusion on 17th March and had a reaction so had to stop infusion temporarily. I got a rash felt very hot and couldn’t stop itching and I was given more antihistamines. The Infusion was slowed down and I tolerated the rest but infusion took 8 hours. The 2nd infusion went well but I still did get very hot but finished in 6 hours. It’s now been 10 days since 2nd infusion and the swelling and stiffness have subsided but I’m still achey with fatigue and bad headaches not sleeping well and feel out of sorts. Not sure if this is normal. Hands and wrists have been achey and ive had to continue to wear compression gloves/ splints. I’m hoping the aching headaches and insomnia subsides. Will report back in a few weeks.

[Barbs52 in reply to MandiS]

Hi, thank you for replying. I’m sorry that you had such a bad experience and I hope you continue to improve. I’m nervous about this medication but if it works and I tolerate it then it will be worth it. Let me know how you go take care 🌹

[OldTed60]

Hi - I had my first round of Rituximab in September/ October. It went fine - felt well throughout - but woke next morning with a puffy face and lips. I spoke to a practice pharmacist who phoned about changing my antihistamine and she told me to report to my rheumatologist as delayed drug reactions can be very serious next time. So my rheumatologist agreed best I stay over to be watched after. I took extra antihistamine (I have mast cell issues anyway) and was absolutely fine - discharged after breakfast and walked miles for first time out walking my husband which I guess was the steroid infusion we get first! Getting next round next month - slightly delayed so that I could get my spring Covid vaccine next week having missed the winter one. I’m dreading the vaccine more than any infusion to be honest! Best of luck!

[Barbs52 in reply to OldTed60]

Thank you so much for your reply. Getting a bad reaction isn’t great but at least it was dealt with and you’re now doing well. I suffer from many allergies so fingers crossed this drug is kind to me. It’s certainly a strong medication but if it does the job then worth it. I hope you continue to be well thank you again 🌹