Rituximab failure ?

[RootsToots]

Hi Folks, my consultant confirmed yesterday that Rituximab has done very little for me, CRP has come down a bit to 38 from over 100 but every day I still struggle to get about. Starting to get properly depressed about it all to be honest. What can they do next ? I had my hopes up that I might at least get a few months where my friends and family won't see me as broken.

[Lolabridge]

So sorry to hear that. I found the cumulative effect of several cycles really made the difference for me. How many cycles have you had?

I tried two anti-TNFs but they didn’t help me at all. Now I’m on Tocilizumab which is working well.

[RootsToots in reply to Lolabridge]

Thanks, I have just had the first 2 infusions. Maybe a different medication will work. Benepali was best for a while until it suddenly just stopped after I had a tooth out and had to stop it for 2 weeks.

[Lolabridge in reply to RootsToots]

Rituximab can take a while to work, unlike some other biologics. If you've just had the first two infusions (two infusions weeks apart which I call a cycle) then do try to give it a little longer to take full effect if you can. If you're not on methotrexate with it (I wasn't) then perhaps you could have a short course of steroids until it really gets going for you.

It was the best drug ever for me and I'm so sad I'm not on it now (it's a long story). After each cycle (which I had every 6-9 months) it worked even better for me, that's what I meant by it having a cumulative effect.

Good luck!

[Flipper12345yellow in reply to Lolabridge]

Hi , would you mind sharing what went wrong for you and why you had to stop taking it ,please?

[Lolabridge in reply to Flipper12345yellow]

It was brilliant for me and made me feel almost normal again. I'm seropositive and the usual DMARDS didn't work for me (or side effects were too bad), nor the anti-TNF Benepali (Etanercept). After a year of joint deterioration and dreadful flaring whilst we tried all the above, Rituximab was a total game changer. After each cycle of infusions there was a cumulative effect and I continued to improve. Unfortunately it also depleted my immunoglobulins and my consultant wanted to change me onto something else. But he promised I could go back on Rituximab in the future if nothing else worked. I tried Imraldi which didn't work, but eventually settled on Tocilizumab which is working well. Long may that be the case!

Good luck with Rituximab! Hope it works just as well for you as it did for me and many others.

[AgedCrone]

Oh that’s a shame, but don’t get too despondent…. ask you rheumatologist outright what he is going to prescribe now…& don’ be put off if he tries to prevaricate.

Ask about Jak inhibitors …look them up….if he doesn’t mention them.

It takes a lot of people a long time to find”THE” drug…but try to hold the belief that you will find your drug very soon.

[Kags1068]

Hi Roots Toots

I'm really sorry you're going through this disappointment. I think I may be in a similar-ish position to you at present.

Like you, I've only yet had one "cycle" of the 2 infusions. I'm at 6 months now, so due the next, but having to wait due waiting on a decision being made on possible surgery in November.

I've had RA 40 years (since early teens), and been through a few drugs in that time, but by no means all of them! Very early on, there were only about 3 drugs, and we were encouraged to try and give them several months at least, if possible. Partly because otherwise your options would very quickly disappear, and partly because the disease can be frustratingly slow to respond, which can be very hard to deal with.

Unfortunately, my inflammation levels haven't really budged since the RTX. I do feel though that I did have some glimmers of improvement during the period, but it's worn off now. As such, I've decided to try at least one more cycle, and my rheumy is fine with that. I've seen a number of re-assuring posts previously (like Lolabridge's), where people have said they haven't felt the full benefit until after 2 cycles or longer. I've not particularly had any ill-effects, and due to various complications, my next drug option is not one I want to rush to, so perhaps that makes the decision easier for me.

I would consider perhaps giving it a while longer and consider another cycle if you could bear to. I know the CRP reduction is not as big as you might wish, but 100 down to 38 sounds like something is happening, and could perhaps continue to?

If so, I would try and have your next cycle as close to 6 months as possible. Do you take any other DMARDs? Could you perhaps have a steroid jab, or a short course of steroid tablets to tide you over?

The other frustration with changing drugs is the amount of time it might take (or not) to get the next one approved, and then start it. Unfortunately, there are never any easy or quick answers for us. It's completely understandable you're feeling down. Do speak with your GP about that if it doesn't pass. Many of us have had thoee phases.

I do completely understand though, if you don't feel it's worthwhile continuing and would prefer to move on. Best of luck with whatever you decide.

Best wishes😊

[RootsToots in reply to Kags1068]

Thanks for a very comprehensive reply. It's good to know someone else if having the same sort of journey. Good luck with round 2.

[RAat13]

I just read your reply to lolabridge, you said you've had the first 2 infusion. I am the same however I was told quite a few people don't feel affects from it till at least a few months after the first cycle or the 2nd cycle.. are you able to give the 2nd cycle a chance? How long ago was your first cycle?

[RootsToots in reply to RAat13]

First 2 infusions were late May early June. Consultant said it should have worked by now. Next if I have it will be November.

[RAat13 in reply to RootsToots]

Maybe try the next cycle, got nothing to lose

[emmajj1971]

I didn't feel the benefit of rituximab until after the 3rd round of infusions which was 18 months but when it started to work it had a massive impact on my quality of life. Hang in there x