Rituximab

[SG58]

I’m due to have my first Rituximab infusion in a few weeks, I got diagnosed with anti CCP Rheumatoid Arthritis 3 years ago and have yet to find the right treatment. Does anyone have any experience of this drug and how it made you feel? I’m ever hopeful this will be the one.

[KittyJ]

if you put that into the search box and filter for NRAS then all past posts will come up, there should be quite a few ☺️

[OldTed60]

I’ve just had my first Rituximab nfusion - only for Systemic Sclerosis rather than RA. It went very well. The previous week I was getting my all day Raynauds infusion and was opposite an older woman getting Rituximab for RA. So I quizzed her a little to see how it was for her and she said it’s sent her RA into remission and she only gets it once a year but it’s been her miracle treatment. I’m not expecting miracles for, me as with Scleroderma it is not straight forward, but I’d settle for some global improvements 🤞🏻😊

[Akaka]

I had my infusion's back in Feb/March, I had no side effects, but unfortunately it didn’t work for me, the recent blood tests confirmed this. I hope this one is the one for you.

[SG58 in reply to Akaka]

Thank you and I hope you find something that works for you soon. It’s so frustrating

[Bookworm55]

I had my first two rituximab infusions in June this year. All went well and so far so good. Not a ‘miracle’ cure of course and I’m still on a tiny oral steroid dose but no flare ups - yet🤞!

The complication for me is that my rheum consultant appointment 2 weeks later was cancelled due to her illness so I’m in limbo re. blood tests etc until the ‘rescheduled’ appointment which I assumed would be in a few weeks but in fact is February next year! I’m not sure how they will assess the infusion’s effectiveness as I could well be due another one by then!

[SG58 in reply to Bookworm55]

Thank you for replying to me, it’s very frustrating to be left in limbo and I find I have to see my Rheumatologist more in the private sector than the NHS to get anywhere.

[ks1966]

Hi there,

I am on Rituximab infusions and I find it amazing. Just so you know, Rituximab was initially a treatment for another ailment, but during the study, people with RA felt much better. So, they repurposed it for RA patients. The only caveat is infections, which is the case with all immunosuppressants. You will have the infusion in the hospital over 6-7 hours. Bring some food and water with you. You’ll be done in no time. In the rare case that you experience a reaction to the drug, the infusion will be stopped, and steroids and antihistamines will be administered. They will then restart the infusion. It’s a wonderful medication and I wish you all the best. Also, make sure to time your vaccines for 4-6 months before or after your infusions. Rituximab depletes some types of B cells in your bloodstream, which are responsible for making antibodies for vaccines such as the flu jab.

I hope this helps! If you have any more questions or need further assistance, feel free to ask.

Let me know if there’s anything else you need!

One final note. Please avoid “live” vaccines at all costs.

[SG58 in reply to ks1966]

Thank you so much for taking the time to reply to me

[whitedog]

Had my first round of RTX in July. No lasting side effects. Am still on Sulfasalazine as well.

I think there's been a bit of improvement as back in May/June I was struggling so much.

Everything's still stiff and painful but I feel like I have a slightly better grip and can move my arms around a bit more. Right knee's still swollen though.

[Alderess]

i have been looking n Rituximab for 8 years. Its been great for me. It made a difference very quickly and i’m down to annual infusions now.

[SG58 in reply to Alderess]

That is so good to hear, thank you.

[pammi2 in reply to Alderess]

have you had any side effects?

[Biologics]

Rituximab has been a real game changer for me. I’ve been on it for a few years now and have the infusions about once a year. I really hope your experience is as positive as mine - good luck!

[rheumatoidsewer]

I have been on Rituximab for about 10-12 years and it has definitely improved my quality of life. Side effects do happen but are not particularly bad just feeling a little tired for a couple of weeks afterward and I tend to get a red face for a few days. No bad reactions to the medication during infusions never seen any or heard of any at the hospital I attend. One point though it does take some weeks to kick in and this length of time can vary so some people assume it hasnt worked when it just needs more time. Its not for everyone and some people find other medications more effective but a large number of people really benefit including me. Trial and error just one of the joys of having RA. I am due my next infusions at the end of October/beginning November so about the same time as you? Will be thinking of you and wishing you well and hoping this is the beginning of a better quality of life and pain reduction for you.

[Gillian1163]

I have been on Rituximab for about 10 years. Only side effect has been a headache on infusion day. Currently on annual treatments and then only one. Was diagnosed with RA 31 years ago. Good luck

[SG58 in reply to Gillian1163]

Thank you Gillian, that’s so good to hear. I’m very hopeful that it will be the same for me. X

[pammi2 in reply to Gillian1163]

are you pain free, are your joints normal, haveyou had side effects my hands and feet are so bad i been told to that rtx after yuflyma failed after 5 months

[Gillian1163 in reply to pammi2]

Sorry to be so late replying but my computer likes to put health unlocked into junk. No I am not pain free and do not have normal joints. I have had RA for over 30 years. Unfortunately at that time there was very little treatment for RA. Enbrel and Rituximab have since controlled it but have not been able to tackle the previous damage. I hope you are able to find a drug that will help you