Hi. I have a long-awaited consultant appointment next Friday to discuss my next rituximab infusion. The first 2 were done in June and July last year and since this January I have had an increase in pain and stiffness. I have given my consultant the heads up that this is the case.
My question is about the Covid booster vaccination which is apparently due to be rolled out from 1 April. So far I have had all the boosters available but looking at the info about rituximab it states that any vaccinations should be either 2 weeks (in some versions 4 weeks) before the infusion or 6 months after. Last year it appears I had the autumn booster only 4 months after the the infusion (I hadn’t read up on this then) and didn’t get covid although I had also had the disease a couple of months before.
Any advice from people on rituximab would be very helpful. Thanks for reading.
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Bookworm55
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I have my infusions generally in January, mostly go a year now, you may find the time increases each time you have the infusions. I usually have the covid jab near to the end of June, almost the last date they are available, then the Autumn one in December.
I read somewhere that the National (England only?) booking centre opens on 18th March so you can hopefully get the date you want. Ask your consultant what he recommends when you see him next Friday.
Yes my friend (75plus) got a text from the gp surgery yesterday asking her to book her booster (that’s what put it in my mind) but I don’t know what date the appointments start from so I’ll ask her tomorrow.
I’m sure my consultant will have some advice too. I had to delay my first 2 infusions as I wanted to get the shingles jab first but in delaying I did end up on steroids for several months which I am keen to avoid this time!
I don’t have the Covid vaccinations any more, but I have been on Rituximab infusions very successfully since 2016,& on my Rheumatologist’s advice always leave three months after my infusion before I have the Influenza vaccination, which is the only vaccination I take.
I think the Covid jabs must be coming out soon as I was asked if I wanted to make an appointment for one at my GP surgery last week.
Can I ask what made you decide to decline the booster? I’m not too sure about continuing with it but there is so much disinformation around that I’m really torn. I have suffered on and off with chest infections for over a year. Athough I’ve had many tests, including for COPD and x-rays, nothing came back positive and my GP decided it was a viral issue. Well-wishers and anti-vac people are convinced it’s as a result of the vaccine. I also have the ‘flu jab and took up the offer of a shingles one this year which is a one-off. I’m on all the usual RA drugs including Methotrexate and Etanercept by injection.
I had really nasty side effects from the first two jabs….back then the medics were running around like headless chickens. I still have no taste or smell Doctors had no idea what to do…one even told me when I described my symptoms that I had Labrynthitis….& when I told him I,d had that three times ,& the symptoms I had just described to him were nothing like it……he just muttered & told me to call 111.
I waited a long time to get two boosters…….& my doctors agreed I need not have any more. Yes, I did have Covid, very mildly…..so I now choose to take my chances. I’m NOT ( should have checked before I pressed send!) advising anybody to follow suit, but so far I am happy with my decision.
The chest infections you’ve had are far more likely to be due to catching viruses as you have a suppressed immune system by RA and the drugs you take to control it. It’s far less likely the jabs are the cause of them. The serious longer term effects of COVID, even only a mild dose, are now more widely known and the only ways to avoid those is to get vaccinated or isolate yourself!
The trouble is I’m very old…..over 80….so 99% of the doctors I see blame my age. Except one very well respected neuro surgeon I have been seeing because of the occipital headaches I get…& when I told him how much worse they were since the Covid jabs he said a lot of his patients were telling him the same thing.
I only have the Autumn covid vaccine along with flu jab and have had covid twice, I just do not like the idea of pumping stuff into our bodies, we have to take so many meds as we get old .
I think I am one of the lucky ones as I don’t pick up any more infections that people seem to get on some RA drugs, than I did pre RA. . Although it did take me16 years to finally find a drug that lets me lead a good life. I also didn’t immediately want the newest drug on the block, unless my rheumy offered it & explained why it could help me. I’m also fortunate that I can eat what I like without any nasty effects.
I honestly think accepting my lot is key….accept it & get on with has been the way I have travelled the nasty RA road. But at the back of my mind I do know it could still come back & really bite me.
I’m on Rituximab and require it every 6 months so the 2 weeks before / 6 months after is never going to work. My consultant has said preferably leave 3 months after or as long as possible (last year I could only leave 2 1/2 months after the Rituximab because the campaign ended - I left it until the last day).
My advice would be to speak to your rheumatologist and ask for their advice. We are all different in our immune response to Rituximab and also how susceptible we are to covid. It is very much a balancing act and they are the only person who knows your situation well enough to help you make the decision.
In fact whilst you are speaking to him why not ask to go longer between infusions? .I worked up slowly & now go 9/12 months between them... ..yes I do know when I need the next infusion..,,but no drastic symptoms & all my tests show the RA is in remission.
I think some rheumies just leave things as they sre…whether they are inconvenient to the patient or not. Thankfully mine aims to “do the business” & get his patients comfortable asap on the least medication,
Yes different consultants probably do it differently. I’ve only had the first 2 infusions so far so no pattern established. I definitely need one soon (8 months since the last one) but doctor implied on the phone that that will set a pattern for the interval between. Not helped by 2 cancelled rheum appointments of course !
I know many people can go longer between infusions but unfortunately for me that’s not the case, we’ve also tried only having one dose (rather than 2 two weeks apart) but again unfortunately for me that didn’t work either. I’m very grateful that my rheumatologist is on the ball and now gets them booked in regularly so I don’t have to suffer. By 5 1/2 months I’m very aware I need the next dose.
You never know how this disease turns on its head..I’m sure your rheumy keeps an eye on your test results & will be looking to help you move to longer between infusions. Some of the ladies I see at the clinic where I have my infusions have been moved to longer gaps by asking their rheumies when they heard it was possible. At least now with Biologic drugs being more readily availably, people are finding a drug to be on long term , far quicker than a few years ago.
I understand that 6 months is the minimum time between infusions as that is the time it takes for the B cells that rituximab is targeting to regenerate. This may vary between people. I think I mentioned before that my consultant knew of a patient who went 7 years between infusions - though she did also say this was extremely unusual!
It’s an individual thing between the patient’s condition & I meant longer gaps not shorter! Also how flexible their rheumy is,…..6 months is the norm…but unless you have a rheumy who will discuss your treatment with you, you could just linger on every 6 months….I am very grateful that my rheumy let me ask when I thought I needed a top up,& now I go 9/12 months between infusions…the less medical appointments I need to attend the better,It’s bad enough having RA without having to attend for treatment too often!
Do you know how quickly the infusion appointment comes up once booked by the rheumatologist? I guess that’s like ‘how long is a piece of string’ but I have no idea since last time (first) the appointment booking was delayed so I could have my 2 shingles jabs. And I was on steroids for pain relief which I want to avoid this time if possible.
My rheumatologist is amazing! We have a great relationship and I trust her completely. Many other patients of hers leave much longer gaps and only have one infusion each time but unfortunately for me that is just not possible, believe me we have tried! I’ve been on Rituximab for over 10 years and it has given me the best control so far (I tried several other biologics first) but I only get that result with infusions every 6 months. My disease just seems to always be very active.
As usual, this is becoming a discussion about whether or not to have the Covid vaccine, rather than answering your query about timing in respect to the rituximab. It's going to be tricky for you and you might have to miss one out.
I think that I'm much the same age as Aged Crone. My decision has been the opposite to hers and I have continued to have the Covid boosters as it's clear from the evidence that this is the best way to be protected as far as possible. Always, it has to be an individual decision balancing the risks (i.e. if you personally have a bad reaction, as some people will), against the considerable benefit both to yourself and to the community.
There is an enormous amount of scaremongering going on, as there has been always since smallpox vaccination was introduced, and I've looked at each scare carefully. For example, today a headline in the daily mail accusing the vaccine of stimulating the immune system and causing problems in someone who had latent TB. I'm sure many of us are aware of the problems latent TB can cause if your immunity is reduced by medication too! People take 'one off' problems and generalise to other people to whom it does not apply. Millions of people have had the Covid vaccine now, the vast majority without problems.
You are quite right..I now live in a retirement community …& quite a few here are on medication for all sorts…so I imagined Covid would be right at home here…but from about 60 oldies - including myself - only 4 or 5 have had it…none of them badly.
They all had the first vaccinations, but now nobody is interested in the boosters. During the actual Pandemic Covid Care at home did send Paramedics to check on those of us who had tested positive, but they said they hadn’t needed to take any in for hospital supervision.
Hi when I was on Rituximab I was planning surgery & the dates just wouldn’t work out. The 2 departments didn’t speak to each other & surgery cancelled twice. My Consultant told me that yes those are the guidelines ideally but there is room for some movement & obviously in an emergency the guidelines go out of the window. I would contact your nurse advice line or ask the Consultant if possible what they suggest & if they can work around it
But the NHS Is in such a dire state in a lot of sreas….patients are lucky to get to hold on to any appointments. I had one important appointment cancelled 59 minutes before it was due . On another occasion, I got two letters in the same post from the same department…both dated the same day…one giving me an appointment…..the other was cancelling that same apointment. I decided enough was enough & cancelled everything to do with the condition supposedly being dealt with.
When you have had your first Rtx infusion your rheumy will decide how soon you can have a booster jab. Don,t just let your GP give you the booster, without telling them you have had a Rtx infusion. A lot of GPs have very little knowledge of Biologic drugs given for RA.
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