How long rituximab?

[RootsToots]

I had my second ritibumax Infusion on 5th June. For the last three weeks my RA seems to be getting worse not better. I'm at the point where getting past 2pm in the afternoon without having to rest is almost impossible due to tiredness plus alot of pain especially in my hands, knees, ankles and shoulders. So can anyone tell me how long it's likely to be before this miracle medicine actually does its thing ? Thanks.

[Jillyanne]

you said it’s your second?? Do you the mean the second 6 months apart or the second 2 weeks apart , sorry

If it’s the second months apart then I would have thought it would have worked by now .

I am on rituximab and it worked within the 6 months , i am supposed to wait 12 months for infusions but rituximab lasts me about 8 months .

I actually have a Rhuemy nurse appointment in the morning , first for 6 years 😳😳 I have a suspicion that she’s going to say something about mine only lasting 8 months

I am off today for my second infusion this morning

[Haired in reply to Jillyanne]

Hi, like Jillyanne it can take a few months to kick in particularly if you have just started on Rituximab. I am on monthly infusions since January 2020.

I find the need for Infusion at 6months. After lots of trials on other medications Rituximab the only one to cleared really bad lupus rash.

Good luck with Rituximab treatment.

( I am in Ireland treatment through private insurance. System different here)

[RootsToots in reply to Jillyanne]

Yes, apologies for the confusion. I had 2 infusions that were 2 weeks apart. That is all. The second one was on June 5th.

[Jillyanne in reply to RootsToots]

ok, you need to give it a couple of months to get into your system , fingers crossed it works as well for you as it does for me 🤞🤞🤞

[KittyJ]

until a drug starts to work then you can of course have flares or feel you’re getting worse. Hopefully you start to feel better once it kicks in 🤞🏻You could speak to your doctors for something to help in the meantime.

[StormySeas]

I'd hang in there, and maybe contact your rheumy team to see if there's anything they can do to tide you over, especially if you've stopped the treatment you were on before being given RTX.

I'd say that three weeks is quite soon to expect a dramatic improvement. I've been on RTX for quite a few years and I seem to remember that with me the change came on gradually, rather than overnight. After a few months I realised I wasn't having the flares I'd been getting previously and that my quality of life was much better. Appreciate this is not much help if you're really suffering - I'd hazard a guess that two or three months would be a realistic time scale.

Best wishes

[Lolabridge in reply to StormySeas]

Yes I agree with Stormy Seas - most of us had to stop previous treatments so can feel worse until the Rituximab gets to work. I recall is was at least 8 weeks after my first infusion until I noticed an improvement. So if you're really struggling now do ask your Rheumatologist for a short, tapering course of prednisolone to see you through the next couple of months.

But I do hope Rituximab will work for you as well as it did for me - it made me feel almost normal again!!

[RApatient]

I have been on Rituximab for 2-1/2 years. Unfortunately the infusion itself makes me feel incredibly ill for a few days. When you start feeling better, it’s time for the 2nd infusion (2 weeks apart). After completing the 2 infusions(about a month out) I notice that I don’t have as much pain. It takes a few months to actually notice a difference. They seem to be working reasonably well for me. I don’t know whether you ever feel 100% pain free from RA but Rituximab has been best so far for me. Hang in there!

[Bagpuss2021]

Hi,

I had mine the same sort of time, and going through the same sort of things as you. I was told that any changed could take 5 - 6 months to work.