Im 63 and I've had uncontrolled RA for 8 years. I've been asked to try Rituximab after other biologics have failed but having read up on it I'm a little hesitant as it definitely sounds the worst for side effects. It seems to me that I'm simply replacing one set of risks and side effects from being uncontrolled to others from the rituximab! Is there anyone else out there who is uncontrolled? How do you manage?
Wishing everyone a Merry Christmas 🎅
My RA was uncontrolled until I was given Rituximab, then my life changed for the better!The only side effect I have experienced is that it makes me more prone to infections, but then so do all the biologic drugs to some degree or another.
With Covid around you have to take extreme care to avoid catching it, But not having swelling, pain or fatigue makes life bearable again.
If no other drugs have worked for you then why not try it? Good luck!
Thank you Lolabridge. I'm very reluctant to try at the moment but fingers crossed I'll get sorted.
I am slowly working my way thro the RA drugs as nothing is taking hold and slowing down the flares. I am waiting for my next face to face on 19th Jan to discuss next step in working out what will work. I get frustrated by it all but some of us are just more tricky to sort and I just feel I need something else supporting my biologic Barcitnib but my consultant feels we might need to change again as nothing improving.With side effects I note all that they can do but I also know the things they CAN do and what they can do is more important to me right now. I usually know really quickly if I don't like the drug or should say my body does not like it s I feel the side effects tell me fast get off the drug.
Hope this makes sense blurry eyes and brain fog!
The thing about rituximab tho is you're stuck with it for 6 months so there's no coming off it. Urgh so much to think about. Thank you Deeb1764.
Stop ”reading up”! Most people who have not succeeded on previous drugs are uncontrolled.Very few people take time to write how effective Rituximab is in controlling their RA…& most Dr Google type statements are years out of date.
I am one who does sing the praises of Rtx….when I was diagnosed in the 1990’s I was a bit younger than you,& Biologics were just appearing & were very expensive ….so you had to jump through hoops to get them.Luckily I was eventually prescribed Rtx..,to begin with it meant 4 days per YEAR having the infusions…now it is two days & hopefully soon it will only be one day if I can go down permanently to one infusion per year.
There is no remembering to take pills, no keeping injections cool…just a day lying in a comfortable chair with TPR every 15 minutes & highly qualified nurses checking your progress…then nothing else until your next infusion.
It does seem that most people who do not do well on Rtx either have other health conditions that are made worse…or they become more susceptible to infections…luckily I have had no problems.
So if your rheumatologist has offered it to you..,grab it….you just might be glad you did.
No I can never not 'read up' I like to know what's going in my body. Its the retired healthcare worker in me I think. Its a hard decision for me so just want some input and go from there. Thank you AgedCrone.
The trouble is…whilst you read up what goes on sometimes in someone else’s body …it is very unlikely to happen to yours….& so you worry & delay taking a drug that might really help you.As a retired healthcare worker…you must know every individual’s body reacts differently…even to an Aspirin….it is dependant on their age, clinical condition & the medication they are already on….as to how Rtx will affect them. But if your rheumatologist has suggested it…all those conditions will have been considered. …& it must have been thought it will help you.
So why don’t you makes list of everything that really worries you & run it past your rheumy nurse?
Hopefully your mind will be put at ease & you will feel able to have the first infusion.
Hi BB, I’d say definitely DO read up as one should be knowledgeable and be proactive with your RA, but be selective where you read and better to look at places such as NRAS and British Society for Rheumatology. Of course your rheumy is the best person to ask.
Rituximab has given me 8 years of excellent mobility and zero inflammation of RA and keeping it superbly under control. No RA pain whatsoever. Only old osteo pain. It has, however, given me side effects in the last 3 years though and it interfered with my vaccines, so do bear timing of the vaccines and Rtx in mind. We need to wait for the optimum time when the B cells are replenished/repopulated as if you have the vaccines too close to Rtx, then Rtx will blunt their efficacy. We don’t know every patient will get a side effect. Minor or otherwise. Just be aware if the rheumy tells you to look out for anything in particular.
If you think if someone says (like me) ... I haven’t needed to go back for a Rtx infusion for 12 months ... then that means it’s working so very well on your RA .... BUT also it means it is still depleting your B Cells/your immunity for the time being. In the absence of those B plasma cells you are not going to make as strong a response to vaccines. It’s vital to get the timing right.
It is as I said an excellent biological for restoring movement and taking the CRP inflammation down to zero/very low. I have always said how it has got moving and walking better than anything I’ve taken, but has some aspects to discuss in depth with your team. Good luck.
Yes Neonkittie17 I only use reputable sites and info from my rheum nurse. It's just the side effects that worry me specifically PML. It's very rare but like the rare fatal clots from the astra zeneca vaccine they have to happen to someone...it worries me. I'm going to chat to my team in the new year as I don't know if it's a good time to start it anyway with the Omicron numbers and concerns. Thank you for your reply 😊
Hi BB, The PML never bothered me tbh as they said it was so very rare. I never had an infusion reaction either. I am due to start another biologic next year when my B cells are hopefully back and I’ll be exactly in the same position as you, wondering if a new med will work and possible side effects. It’s a very unsettling time I know, but we have to take something to keep the RA under good control so we need to make an informed choice and ask as much as we need to the rheumy team. Good luck and you’re most welcome. You are doing all the right and sensible things. 😀
Thank you 😊
I too am very reluctant to take Rituximab because in very rare cases the side effect of the virus jcv being reactivated is devastating. I’ve already pulled some very short straws so am hesitant currently and am trying abacept. I might review this if things don’t work x
Ps read everything my rheumatologist always told me you have to be your own advocate as this is a long journey
I feel decision making is such a burden because at the end of the day its down to your own choice. I hate making big decisions as it is let alone about medication! I absolutely agree you have to read up and get all reliably sourced info to be able to eventually make that decision. I hope the Abatacept works for you. Good luck 👍
Hope Abatacept works for you.🙏🏻 I’m due to start this next year.
I've had RA for nearly 16 years. My consultant has recommended many different medications & I have been on Methotrexate for many years. A different consultant suggested Rituximab and what a difference it made! My treatment was stopped when Covid arrived, but I'm hopeful that I will be able to get it again. Steroid injections have helped too.
I hope so too if it worked so well for you. All the best stay safe 🙏
Hi, I was diagnosed in 2013 and was uncontrolled whilst going through all the normal medication trials, I was offered the Rituximab infusions about 3 years ago. After about a year it started to really help me. l am now just about pain-free -(In-between infusions)- I know we are all different but I am so glad for Rituximab and just hope it continues to work.
I haven't had any side effects of Rituximab, but we are all so different!!
It is also interesting to speak to outhers on the infusions and listening to real people talking about their experiences with Rtx, it does seem to work reliably for a lot of people.
I do hope this helps!
Yes that's the thing isn't it...we're all different. If only one drug did it for everyone! I'm glad that it worked for you. I just have to make a decision....the hard part. Thanks for your reply. Stay safe.
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