I’ve been getting ritixumab infusions for the past 6 or 7 years and they have proved to be a godsend, giving me roughly a year without pain or symptoms usually, but my consultant has now told me it’s madness to continue because it flattens my immune system and the risk of Covid is greater. I’m now waiting for some scans to justify an alternative and in the meantime have been given etoricoxib to stave of any flares over Xmas or barring a relief from this, it’s back on the old prednistolone, which I’m dreading, he bluntly told me when prompted that finance was not an issue but I have my doubts, is anyone else in a similar situation,
Many thanks
Steve
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But how do you feel about that? Obviously your consultant knows your medical circumstance well so must have had good reasons for saying that, but quite a hard thing to hear.
I would certainly want to question why rituximab is that much more of a risk than Pred. Yes with pred you can of course stop it, but if you catch covid then not sure huge difference?
I agree with HH and, as a fellow Rituximab user, it’s not what I would want to hear. Are you on MTX? What alternative RA treatment is being suggested to replace the Rituximab?
I have been on the biosimilar Truxima but was advised my hospital is switching to Rixathon as it’s cheaper. It does make you wonder whether there is a major economy drive going on in the NHS to switch us to cheaper drugs.
Are you still having 2 infusions every ? Months? I have been on Rtx since 2016,& I have dropped to one infusion every 6/7 months & all seems to be going well.
Of course it will depend on lots of issues..but maybe you could speak to your rheumy nurse & see if there are alternatives for you?
I’ve just had an infusion and second one due next week - was told I’d have to shield for the next 6 months, but the new-style Covid- lite version of shielding as opposed to the stricter, hard core version we had in the first wave.
Like you, I would be suspicious that the motivation is financial. “If it ain’t broke don’t fix it” comes to mind...if RTX works for you I don’t see the point in taking you off it.
You’ll still be immunosuppressed on steroids (tho presumably not as much) so the logic is nuts! Also, we all know long term steroid use comes with its own Pandora’s box of side effects!
I’d take his “it’s madness to continue” line and counter with “it’s madness to DIScontinue”!
No it’s not barmy at all....& it might not be necessary to stop completely.
Research has been going on for a long time on the regularity and dose of rituximab infusions and it is appearing that one infusion every six months is just as effective as two.
I have done that for my last two infusions & have had no bad side effects..........but I don’t take Mtx nor after a great deal of thought by my rheumatologist do I have the steroid pre-infusion....but I have never had a Rtx caused infection ....if you do have Rtx caused infections that probably wouldn’t be allowed.
I think the least drugs I can take & remain comfortable & the less time I spend having infusions the better.
Anyone in this position should have a discussion with their rheumatologist ....after all with all the questions about who can have a Covid vaccine ....it may come down to which drugs we are on.
In that case he should have a conversation with his rheumatologist asking if he is considered in remission on two infusions every six months ....maybe his doctor would consider trying just one infusion every x months....surely no one wants to stay on a higher dose if a lower rate can be just as effective?
Or maybe if his doctor is thinking he could manage without a date for his next infusion ...& reassess the situation in x months?
It really is all about communication & understanding how the rheumy is thinking....there are all sorts of different opinions.....& each of us will have a different solution.
I have sinusitis and catarrh as a result of taking Rtx it is thought, as many people can develop bronchial episodes after several rounds of the med. (I saw scholarly articles online stating around 35 per cent of people can have these side effects.) I am on the original product. Not a biosimilar. I am lucky that I can usually go to a year before I need it so I’m having it less than say someone who needs to go just as soon as six months are up. I had to go back at six months a couple of times two years ago when it didn’t last as long. It’s usually around 9-12 for me. This last time I went a year although that was also due to Covid, but I didn’t need to ask to try go sooner. My bloods/inflammation were <5 after 50 weeks since previous Rtx. My senior rheumy is satisfied that as my CT scans are clear and show very strong lung function and I don’t have asthma that I deal with the sinus/catarrh episodes as they come, with abx. My respiratory consultant recommends the same too as my rheumy.
I thought straight away in March that such a potent med as Rtx, or for example the JAKs, may be an issue for being suitable .. or not .. for the Covid vaccine. We may be advised that to get best results, we should avoid Rtx near the time of a Covid vaccine, just as we are advised to leave a certain space between having flu vaccines and Rtx. I do agree and have always thought that we could well be told that the Covid vaccine doesn’t work very well at all if you are on a certain high level of immunotherapy. We just don’t know and hopefully someone will be advising rheumatologists who will then be advising us. Seems Steve’s consultant is saying that already. 😑
I’m working on the system if it ain’t don’t broke don’t try to fix it!
I’m doing fine on one infusion every 6/7months ...I and my rheumatologist did have some concerns over the sinus infections reported when I first started the infusions......as I have a history of over 10 sinus surgeries over the years ...but I have never had a sinus infection since I’ve been on Rtx ...not even a cold.......no rhyme nor reason.....but what ever is in it thankfully suits me
As the Covid vaccine is still up in the air I’m not worrying about it.... and I certainly don’t want to stop taking a drug that for me has been so successful on the off chance of getting a vaccine...... that nobody really knows how successful it will be.
No, I’m not going to come off Rtx unless a really adverse side effect occurs or it stops working. To have my CRP <5 after 50 weeks since my last infusion shows it is working well and lasting longer these days. My rheumy said exactly the same .. don’t try fix what isn’t broken. The respiratory consultant said this summer he would like to investigate my sinuses and see if post nasal drip is a factor too. Hopefully when it is safer to do so. I’ve wanted to do that too. Many years ago I had sinus X-rays and was told my drainage holes are minute so I do get a blocking of sinuses problem. You seem to have had a lot of issues with your sinuses! I don’t get a standard cold as such. Rarely ever have done. Pre or post RA/Rtx. It’s straight to the chest with catarrh.
I don’t think the first vaccines will be suitable for those on immunotherapy at our level. I think such a vaccine isn’t as imminent and we will have a longer wait. Can’t do anything about that.
Hi everyone. I’m new to the group. I am switching from Abatacept to Rituximab as I no longer get relief. I’m having my first counselling session about Rituximab on Tuesday. What’s it like after the first infusion? I mean how do you generally feel?
That’s like asking how long is a piece of string.... everybody reacts differently to their first Rituximab infusion!
You will be very closely monitored during your first Infusion, & if you do experience anything unusual just alert your nurse & she will probably stop the infusion for a short while, then restart at a lower speed...that is quite normal.....& will mean you will carry on until the infusion is finished. It is usually very uneventful, but the first infusion does usually last around 5 hrs.....then it varies time wise as to how fast you tolerate it.
Personally I do feel a bit tired the day after the infusion....then I just carry on as normal feeling fine.
It took me 16 years of Dmards until I was put on Rtx 4 years ago...best decision ever......my life has been virtually pain free ever since....& I have no worries at all...but as I say......everyone has a different experience..I hope you get on well with it.
Out of curiosity was RTX your first biologic? I have an appointment to discuss which biologic I will be going on. I assume you have no say in the matter although it generally seems to be the one that works for ‘most’ people.
Yes...Rtx is my first Biologic drug.Your rheumatologist will usually suggest a couple of different biologic drugs that will suit your particular situation....often with different delivery options...infusions, injections or pills.
If you have any other health problems there may be some Biologics that won’t be suitable for you-I had previously had cancer, and the type of RA I have showed Rtx would be suitable for me with that previous history....and the idea of only having treatment every six months suited me.
But you are right every Biologic is not suitable for everyone,& you can’t just choose the one that you have read about that seems to work well.
Good luck which ever ones you are offered ....I hope you find one that works for you
Yes, no surprise you were offered Rtx as first biologic and not Anti-TNFs, AC, as you’d had cancer. Normally I was told by my rheumy, you have to try two anti-TNFs before eligible for Rtx. Of course they look at your medical history and that seems to be exactly what they have done with you and made the right decision! Rtx gives enormous freedom.
Of course my rheumatologist made the right decisionNK.......it is his job to know which Biologic suits each of his patients....that is why he is such a popular consultant !
So good when you get the right rheumy with the relevant expertise! My rheumy is a gem too and everyone wants her now. She is a biologics specialist so doesn’t usually see patients who aren’t on biologics. There’s enough of those on biologics to keep her very busy. My previous senior rheumy had been there 25 years before she semi retired six years ago. She still teaches/lectures at Uni. She was my rheumy for 20 years and was in Leeds prior to that for 15 and was a very hard act to follow, but this more recent lady of six years now is brilliant. So is my rheumy biologics sister. I’ve occasionally had to see someone else when my biologics rheumy was unwell and they’ve had to say .. I will have to get back to you on that as I’ve not got the knowledge Dr S has! The others are both senior lady rheumys too. I’ve never had a male rheumy! I don’t mind if it’s a man or woman. My GP practice has five lady GPs. Ladies dominating the docs and rheumys in our area. 😀
Thank you I’ve had RA for 18 years and I used to be on Humira before Abatacept but kept getting infections. I’m hoping this Rituximab will make a big difference.
Hi Soulful, Oops this is in middle of the Rtx and Covid thread, so I don’t want to distract too much from Steve’s post. 😀
Rtx has been the best med ever for me for controlling my RA which was very bad pre Rtx. I find it gives me a lot of freedom as I only need to repeat it every 9-12 months usually. The day spent at the Hospital (it’s a long procedure/infusion) is worth the freedom you get before you have to go back.
I sometimes feel tired between 4/8 weeks them my energy returns. Wishing you good luck for your Rtx counselling.
Hi, I’m going the opposite way to you! I had no problems with the infusion. A bit sneezy during the infusion but they give you an antihistamine for that. 👍 Unfortunately didn’t work for me so trying Abatacept. How did you find it?
Abatacept never gave the results I had with Humira. I was on Humira for 8 years then it stopped being effective. I was on Abatacept for 2 years but still felt quite a bit of pain. I moved home and my new RA consultant suggested Rituximab
I actually recently read guidance on various day patient infusion treatments for autoimmune diseases. The guidance does state infusions should be reduced if the patient is stable and it is clinically appropriate due to risks of Covid. However, it should be assessed on each individual situation and a blanket decision should not be made. If I were you, I think I might want an explanation based on your own medical need - weighing up the risks of oral steroids vs rituximab. I can locate the guidance for you later if this is helpful?
Well that's interesting. I was just talking to my GP about a letter the RA Consultant sent to her (but not copied to me incidentally) which said,
"Overall in my opinion the RA at present is stable".
The whole sentence was underlined. I asked the GPif she had any idea what was the significance of that statement. She said no. I wonder whether it's the same issue going on here. I'm not on MTX or any of the other cheap DMARDS and I've reduced my Prednisolone to 5 mg daily (4mg from Monday). What the hell will I do if I can't have the Rituximab?
Please Crashdoll will you send me a copy of that guidance if you can locate it? Thanks.
Don’t be apprehensive .....if your rheumatologist considers you to be stable & able to manage without regular infusions why not believe him? Did the letter actually say to stop your infusions completely?
I am now on only one infusion every 6/7 months....maybe your rheumy is thinking of something similar? Maybe you could do that rather than stop Rtx altogether.....after all...surely the least meds we rely on the better?
I feel no different having halved my infusions...but I can’t take Pred so I am just relying on the reduced Rtx & it is going fine.
I have not seen my consultant for a year and only had phone appointments since when he has focused almost exclusively on my blood results. We had little discussion about how I was feeling.
I had to wait an extra 3 months for my last infusion (i.e 9 not 6) and was definitely flaring and beginning to struggle. As my inflammation markers had showed a downward trend I had to push to get the infusions in August. After them my RA symptoms and mobility were much improved. I am concerned I will suffer if I have to wait 9 months again or only get one infusion per cycle. Added to which the drug is being switched from Truxima to Rixathon on cost grounds.
I have a Biologic Rescore appointment with the nurse next week and will ask if the hospital policy regarding cycle intervals and number of infusions per cycle has changed and, if so, why.
I’m pleased you’re managing with fewer now but, if I recall correctly, you have been on Rituximab for many years so will be benefiting from the cumulative effect of the cycles every six months. I’m only up to 3 cycles so far since I started in April 2019.
Although I have had RA for over 20 years I have only been on Rtx since 2016....And the first time I only had one infusion I was aiming for a nine month interval but only only made seven ....but clinics usually hold a chair or two open for people who need an infusion earlier
I was really pleased my rheumy suggested it....I have always been guided by him for the last 14yrs......& sometimes I did think it would all go pear shaped when I didn’t feel too good, but he was usually right.
I don’t think after your first couple of infusions the cumulative effect has much influence on whether your rheumatologist feels you are ready to go down to one infusion .....as long as the cells are replenished he is happy....in fact I think the one infusion has only been introduced in this country .....over the last two or three years as far as I know....but has been tried for longer in the US.
I am always up for anything that means I can reduce the amount of medication I take ......I do agree it does sometimes mean you have a bit of discomfort for awhile but I am willing to suck that up in order to take less of the drug.
Of course I am retired and don’t have a schedule to keep..... I don’t know how I would feel if I had to get up every morning and go to work if I wasn’t feeling 100%.
Yes my infusions were reduced as I was doing well on 2 six monthly infusions...I now only have one infusion...but so far have only managed to extend to 7 months...but on the whole the one infusion is equally as effective as two...but until you try it you won’t know.
I am keen to exist on as little medication as possible......but with Rituximab it appears. you don’t equate quality with quantity.
Hi Steve, I have been on Rtx since 2014. I have the original product and not a biosimilar as I asked not to switch as I had failed many failed meds and had joint damage as a result of those. Then I had been stable for three years on Mabthera original product and did not want to revert to being back to where I’d been before Rtx. My rheumy fully understands and agrees/supports this. I was in a very bad way pre Rtx. She never wants me to return to that.
I have spoken to my biologics nurse-sister specialist in the summer about the very same concerns your rheumy has about Rtx taking the immunity too low (my IG is tested thoroughly and has always been very good) and was told that it is much better to have inflammation levels under control with Rtx than taking steroids or a lesser R.A. med. Whether that is going to remain the policy at my hospital remains to be seen and tbh what you have said is not much of a surprise. I also wondered at the start of Covid if patients would be switched to meds which didn’t lower immunity so much, but if they don’t protect the joints so much then it could be a difficult choice if offered. You haven’t been given a choice here and that seems unfair. Has the rheumy ever said that your IG blood results have shown the Rtx is lowering immunity too much or was the ”flattening” remark a generalisation? As you were lasting a year (like myself mostly) until returning for Rtx, you weren’t having any excess of the med. Presume you weren’t having any side effects of it that concerned the rheumy?
I was told in the summer when my infusion was postponed, that my hospital were ready to start doing one infusion only as the research has shown it’s just as effective and why give someone two infusions if one is as effective. o was ok agreement and jsve wanted to try this before but was told it wasn’t the procedure. Now several years on it is for many hospitals. Of course I’ll wait and see how that works and see with my blood inflammation levels, as it’s two months since I’ve had mine. Maybe I’ll have to go back sooner. Also my rheumy nurse said due to Covid it made sense they didn’t have you on the hospital twice, but they were going to change to one infusion anyhow regardless of the virus.
I hope your rheumy can advise what is an alternative for you sooner rather then later. It isn’t something you want to change given you’ve had such great results on Rtx. Neither would I. Frustrating when you’ve been doing great on it.
I was also told initially I’d have to shield for 12 weeks due to Covid after my infusion but as it was calmer in terms of Covid cases then I was told 4 weeks strict shielding. Then same as usual for me as my nurse knows I’m very cautious. If we (as patients on high level immunotherapy) are told at some point soon that Rtx patients have to continuously shield then you have to ask yourself if it’s something you’re prepared to do much longer term. I wish you could get more clarification and I wish you luck, Steve.
Thanks everyone for such a great response, I’ve been diagnosed since 2004 when I had an entire body shutdown, I traveled the usual road of dmards and pred. Then mtx and enbral injections which worked for 6 years but by far the best results I’ve had is ritiximab, I take hydroxychloroquin daily as mtx made me nauseous and after a double hit of ritx over two weeks I found that it takes about 6 to 8 weeks to kick in and my life becomes normal for about a year. My problem has always been getting re qualified. There’s a fine line between random and occasional flares and complete shutdown for me, my bloods look good between flares but I know what’s coming, my consultant looked at the good bloods but seemed to have an aversion to rtix because of Covid, he said you don’t want to be coming to the hospital for an infusion that will flatten your immune system, his words not mine, he’s right that I’m doing ok but I explained I’m at the year point and the aches and pains are stirring.
They only reacted last time after 18 months, I was riddled and surviving on pred. They can’t hear me now whilst I’m ok and instead want to try something else, you wouldn’t know I’ve got a problem I work full time in strenuous work, when I’m bad I struggle to dress, walk, drive but I still go in and fumble through.
The first 5 or so years I was given the infusion yearlyish and all was well, then it started to get harder to qualify, sorry for going on, I suppose we’re all lucky to be able to rant.
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