Questions about rituximab experience

[poppies_are_red]

Hello! My doctor has recommended that I try rituximab if I have another flare-up of arthritis, and it would also help my low platelets. I'm going into my third year of university, and I have an overseas field trip in January 2024. I have a few questions about rituximab that I was hoping someone would be able to answer for me, please.

- What is the waiting time for it? Is it a long waiting list, or a pretty immediate like scheduled in the next month or so?

- What was your experience after the first rituximab infusion? Did you have to take time off work/studying? How did you feel in the first week after the infusion?

- the NHS website gives a lot of side effects, what 'common' side effects did you experience?

- Any tips you can give me from your rituximab experience.

Thank you !!

[CarolMcl]

Hi, I've had retuximab infusions a few times, once it was decided it was arranged for after blood tests to make sure it was suitable for me. The only side effect I had on all occasions was that I couldn't sleep the night of the infusion, this was put down to the steroid injection given on the day. Other than that I was fine. Hope this helps 🌹

[poppies_are_red in reply to CarolMcl]

ok thank you ♡

[cathie]

I suspect waiting times vary so it’s not easy to answer this. You know there’s two infusions two weeks apart. They are done very slowly so take about 4 hours and you’re checked (bp, temp ) regularly. I’m sometimes tired afterwards, get a red face for a day but apart from that, nothing. It takes a few weeks to kick in but usually it’s given only every six weeks.

My main concern if you’re traveling is covid because the vaccines effect seems to be reduced by rituximab so I’d want to know given that you’re young, could you get a jab. And people on rituximab should be eligible for antivirals if you test positive. Could you get that covered if you’re away.

Having said all that, it’s worked really well for me, so good luck with it. And with your ? Final year at uni

[poppies_are_red in reply to cathie]

Hi Cathie thanks for your reply. Glad to know you didnt have many side effects after rituximab. Regards to covid vaccine, yes I've booked a slot to get it done next week!

[cathie]

that’s good. I found the steroid you get with it made me productively active so worth benefiting from that.

[Haired]

Hi , I live in Ireland so system is slightly different. As with a lot of people here I have private health insurance so my treatment is looked after by my Rheumatologist. I have Lupus & Sjogrens stomach, bowel problems etc. Due to side effects / treatment not working with Methotrexate, Imurin etc went on Rituximab in Jan 2020. Which has really helped.

I just had my 6 monthly Infusion on Thursday last. Infusion bloods etc can take up to 6 hours. Blood tests have to come back in order before you can start Infusion. They start off slow and gradually increase the dose during the day. Procedure exactly as Cathie said.

For a day or two after you might feel tired and possibly a headache. But we all react differently . Regarding COVID Booster I would check it out as I had to wait a good few weeks both before and after Infusion for Injection and for flu jab.

Also had to have Shingles Jab before starting Rituximab. Best of luck with it and your trip.

X

[cathie]

Another thought then I'll be quiet! I used to work as an HE lecturer in the OU, Warwick and finally Oxford, and am happy to talk about the impact of chronic illness on working. I'm assuming that your tutors know and understand your situation, hope they're sympathetic!