I’m in a bit of a dilemma and would welcome opinions on my current situation.
I have recently been invited for a Covid vaccination due to being on Rituximab. I don’t really want to have the jab. I have had 3 Pfizer vaccs since 2020 but none since early 2022 as the last jab resulted in a big flare. I have had covid twice since then while being on Baricitinib not Rtx (I only started this last October) and I received anti virals both times. I was unwell but not seriously. My question is whether or not I am likely to have a worse outcome if I catch Covid now I am on Rituximab not Bari?
I asked a Rheumy Nurse on the helpline and she said it is likely I would get it worse as Covid and Rtx ‘act on the same thing’. However, a few weeks later I asked the same question of a different Rheum Nurse during a face to face appointment. She said that the risk was the same with all biologics but being on Rituximab would just increase my risk of contracting it. Does anyone have any idea which advice is more accurate?
Has anyone been in a similar situation or had Covid whilst being on Rituximab but not vaccinated?
thanks in advance 😊
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Claireybee
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Hi, your second nurse is wrong, not all biologics are equal re risks. They have found that tnf Inhibiters, as well as biologics that target IL6/12/ were no at greater risk of severe disease, and the anti viral policy was changed to reflect people on these as a mono therapy. Baricitinib was actually used to treat covid patients and reduced the mortality of the patients.
However rituximab is associated with worse outcomes for patients. Here’s a study published in the lancet
This paper shows that those on rituximab who have their vaccines, have a low risk of severe disease. So to me it’s a no brainier, I would sooner have a flare than severe covid.
Yes, those on MTX are not more likely to suffer severe disease. They actually found that those on MTX had milder disease. Here’s the full report, and a screenshot. Obviously those on other immunosuppressants in addition to MTX may have different outcomes.
Always helpful to read your v knowledgeable comments. It’s really interesting because, as someone currently in bed with severe pain flare following my Moderna vaccine (my 9th C19 vaccine, first nasty reaction, first Moderna) I have assumed that a bad reaction was a good sign so I was previously concerned by no reaction and a bit head scratch about what others describe as seriously nasty reactions until now.
After reading your link about MTX I just looked up my DMARD, Mycophenolate/ MMF. And to my surprise I learned that it can actually be used to good effect to treat Covid. And now I’m wondering, having managed to avoid Covid so far, if I even needed this Moderna vaccine. I’m going to be starting Rituximab after bowel stoma surgery - so was thinking I must keep up with my boosters when invited.
But so much that wasn’t known or well understood about our drugs during the pandemic has apparently been updated. And now, body in a rage of pain, I think I might prefer to take my chances with Covid than go through this hell again. My husband had Covid 2 years ago and he says he certainly didn’t feel worse than I’m feeling now ie 2 days in bed so far. Don’t think I can go through this again unless I’m told to by my rheumatologist.
That's interesting,I have just had covid and take methotrexate. I had been due to have my covid jab next week, but I've been told to wait at least 6 weeks now. As it ends by 30 June , I may miss this one. It has not been severe, just like having a cold, so maybe the methotrexate has prevented me from having it more severely. I have been told to miss the next two doses of mtx and have a blood test before resuming it.
Edit. Actually I've just had a look on the government website and it seems you don't have to wait 6 weeks for the booster provided you have recovered.
Thank you. I will read that now. I agree that I would rather flare than have bad or long covid. However if my experience would be similar to previous infections I’d rather take the chance. Thank you for taking the time to read and reply to me 😊
I did think that until I got COVID which is the only time I caught it and had a gastric bleed which they said was caused by the covid and now I have colitis on top of everything else.
Nobody seems to be considering the time scale between having a Rtx infusion & a Covid vaccination.
As far as I read 5/6 months after infusion at least.
That maybe be why people who do have a jab..,but too close to infusion ….still get Covid…..some very badly…so the vaccine didn,t do its job of aiming to ensure a mild infection?
This I from the NHS website
“THE critical question is, “what would be the appropriate timing to vaccinate IMDD patients after rituximab treatment?” Experts suggest waiting at least five months after the last rituximab administration .”
interestingly the Lancet article places Baricitinib in the same category (if I’ve read it right)
‘Most studies also show that use of targeted therapies does not confer risk of severe COVID-19, with the exception of rituximab or Janus kinase (JAK) inhibitors, with which some studies have reported worse outcomes.’
I am 80+, have been on Rtx for 8 years & when I did eventually catch Covid it was no worse than a bad cold & I did not need the antivirals.
I first had two AZ vaccination’s that made me very poorly…then 6 months later two Pfizer’s…that didn’t even give me a sore arm
That was it….only had those 4 jabs.
However…being on Rtx has not meant I got any other infections either. But if you are in the unfortunate position of catching every infection going, you should ask your doctor’s opinion. But you have to decide by 30 June.
My doctor said he thought I need not have this latest jab.
However, my experience is very different. I’ve been on Rituximab at least 10 years. Prior to covid (and still now with the exception of covid) I didn’t get colds, flu, other infections any more frequently than before. Since Autumn 2022 I have had covid every 5-7 months and have been really ill with it each time. Even with antivirals I have spent the best part of a week in bed (not like me at all!) and was nearly hospitalised once.
The one thing I’ve learnt about covid in the last 4 years is that it seems to be totally random and you can’t predict who or who won’t be badly affected.
Personally I’ll take every vaccine offered in the hope it will give me some extra protection.
I absolutely agree with this. We know little about covid still but long covid sounds terrible. Everyone’s experience is different but I’d err well on the side of caution with jabs. I always take them
Yes. My rheumatologist said ideally I should wait 3 months but with seasonal campaigns that’s now not always possible. My last one was on the last possible day of the winter campaign but that was only 10 weeks after, and the campaign didn’t start in time to get it before. Likewise this Spring campaign will be similar. We both agree that hopefully some protection is better than none. It’s not ideal but it is what it is.
I think the medical studies done actually say 6 months but as that is just not possible for me my rheumatologist has given personal advice for me. Do what your rheumatologist advises you. There is no one size fits all - it’s a balancing act.
I was told by an immunologist .. well more than one .. and my senior biologics rheumy that 6 months is the ideal time to wait to get your vaccine after having had Rtx as there’s the average time that B cells will start to repopulate. They can be slow and should be at a certain threshold to be able to produce Covid vaccine antibodies. If you think how have often do you need to repeat your Rtx/how soon do your B cells repopulate? .. then your vaccine isn’t going to work or work enough for you, if your B cells are still absent, but the vaccine should still work on your T cells. When the B cells are depleted by Rtx, that means you aren’t converting the B cells to the relevant immunoglobulins/antibodies that are needed to ensure the Covid vaccines work for you. Why if you can go a long time before needing a repeat of Rtx (that was me .. could last 12-18 months) then you know it’s unlikely you’ll have as good a vaccine response. Still worth trying with the vaccines though, my medical team said. Sometimes that ideal timing isn’t possible for when we can get vaccines and we have to go for it and do the best we think. 🩷
Thanks for this. I’m over 6 months since my last infusion and given the pain I’m starting to experience I’m pretty sure my B cells are repopulating well 😏
Well this in today’s newspaper seems to have the right view on Covid:
“COVID signs warning the public to socially distance and wear masks more than two years after the end of pandemic restrictions must be removed, scientists have told ministers.
Pandemic scientists have called for a campaign to remove the remaining posters, ground stickers and loudspeaker announcements from GP surgeries, train stations and supermarkets.
Prof Karol Sikora, the oncologist, and Prof Sunetra Gupta, of Oxford University, said there was no need for them to still be in use.”
Even though I’ve had so many Covid infections I totally agree. Society has to go back to normal for the greater good of the many.
That doesn’t mean that the vulnerable shouldn’t try to protect themselves, for me that is by taking the vaccines I’m offered and getting antivirals as quickly as possible when I catch it. Social distancing and mask wearing for me is not appropriate - I am a people loving person - I need to see people and be able to smile and interact with them. For others who are vulnerable they may choose to limit their contact and/or wear masks. It’s a personal choice. And that personal choice will be influenced by their experiences of covid, how many times they’ve caught it and how ill they were with it. As I’ve said before how covid affects people seems to be very random and there isn’t a one size fits all response to it.
Exactly….we all have to deal with how we proceed in our own way…..& I think people who are struggling should be given help, because life is for living…not worrying about catching Covid.
But we also need to remember it’s not gone away and for some it is still a valid concern.
People saying ‘don’t worry it’s just like a mild cold’ make me so cross as for me it not - it’s like a nasty flu. How do they know how it will affect everyone else. I have no problem with people saying for me it was just like a mild cold but I’ve heard many people (I hasten to add not on here!) saying don’t worry it’s no worse than a cold now.
Until you’ve experienced it yourself you won’t know how it will affect you. People need to be supported to weigh up the risks for themselves and do what is right for them.
Agree! Well said. It is still around and will be for our lifetimes to some extent but I hope it downgrades considerably more as the years go by. I see it as being an echo that keeps returning, and for some it’s mild and for the more vulnerable people it’s a big shouting echo and, as you say, it can be much more than a cold/flu. To those who say .. Covid is over … nope, it can’t be over when there are new, emerging variants (FL1RT) and people in large numbers still catching it, but it’s not the world wide emergency it was and the WHO has stepped it down from that.
My SIL got it 2 weeks ago and didn’t know when she travelled from her home in the channels islands to a little holiday alone in the UK. She tested herself first day here as felt off colour and was positive, so ended up spending her 3 day holiday in a hotel room and she’s still testing positive 12 days later after returning home, so it doesn’t just give everyone a mild cold like effect for 2-3 days then it’s gone. She’s fit and strong and her one medical condition is well controlled hypothyroidism. She’s 67 but said she can’t shake Covid off and feels really out of sorts although doesn’t feel it’s serious. Let’s hope not. She isolated in the hotel and didn’t go to her planned events which were all outdoors .. organised RHS flower shows, etc., but returned home on the plane 3 days later. 🤷♀️ No, it’s not over but it’s in a much better place.
I’m not bothered what anyone else wants to do as it’s fine by me as if something doesn’t suit me re loads of people coming at me indoors then I don’t participate. I choose as wisely as I can. If anyone wants to try belittle anyone else who still needs to keep it safer, then it says such a lot about that person who is being unkind. I’ve not got time for any of that. No-one who has medical reasons to shield/go carefully should ever have to explain themselves to others .. not in any aspect. We all have a right to try do what’s best for ourselves and should not have to worry re having the approval of others who are so often less educated/aware on the things we are dealing with. 🩷 The fact many feel entitled to tell you what you should be doing is a nonsense. We’ll all do what’s best for our own health and well-being. 😍 x
Thanks. I’m not unduly worrying and I’ve not taken up the vaccine for a number of years. I would prefer not to have the vaccine which is why I’m trying to evaluate if my vulnerability on Rituximab is any greater than it was on Baricitinib.
Sorry AC I disagree! Covid is definitely not over, prevalence is increasing, and Long Covid is a huge problem for the economy. The particular newspaper you choose to read is notorious as a mouthpiece for the Tory government and frequently posts articles in a similar vein. There are plenty of highly respected medics and scientists who openly disagree with the two you mention on a number of points.
Professor Gupta’s beliefs on herd immunity and that no lockdowns were needed and there won’t be a second wave (😳) and her forecasts/predictions/numbers were way off what other scientists and virologists were saying. She had to go back to the government and say she was wrong re the forecasts. She also said Covid was on its way out in 2020. (Err, not exactly.)
Oh dear ……….. I did not say Covid is over ….if that’s how you understood…you misunderstood …..what I meant was, we’ve got to stop living as if we’re going to catch it tomorrow.
I’m sure the majority of people still take care……….and being realistic that is all we can do………..
As I said I’m my post .. “We all do what’s best for our own well-being. “ That’s in every way and not just higher risk people re-emerging or going safely, semi-shielding, etc. It’s also how you perceive risk. Whether your personality has that element of risk taking in general or you’re inclined to be cautious.
I think we are being realistic to our own individual set of circumstances. There isn’t a right or a wrong, but “no one should be made to feel uncomfortable” is exactly what my rheumy said to me recently. Some people might need their consultant’s assistance on determining what is safe and what is not .. but most people can judge what’s safe and what’s not by now. You know when it’s safer and right for you. Not anyone else pressuring you.
For most that’s what it had/has to be … decisions and choices, coming from their own minds, and feeling confident in their choices.
“Exactly….we all have to deal with how we proceed in our own way…..& I think people who are struggling should be given help, because life is for living…not worrying about catching Covid.”
It,s fine for you to disagree with me….but please do not put words in my mouth
Hi Liberty … anti vaxxers? (Think predictive text might have intervened! 😁) I’ve read a lot from them, especially Ms Gupta over the last few years and it would certainly seem that way. 😑
I can't imagine gaining any additional protection from getting another covid vaccination if you've already had three vaccinations and have contracted covid twice on top of that. But that's just me . . .
Also it has taken many people with high immunosuppression 4 or 5 vaccines to produce an immune response (I was one of those) hence the … nudging of the immune by the boosters … my immunologist refers to! x
I’m of a similar opinion. I’m not even convinced they work for me. I had an antibody test following the first jab and my antibody levels were way too low to be able to offer protection.
How true! As I have just said all we can do is take care & hope Covid misses us .I am sure if there was some sort of treatment that would 100% protect us from catching it. …..we’d all go forward for it …but there isn’t so we’ve got what we’ve got ……& we have to live with that.
Anxiety brings stress & the majority of us try to avoid that …so think positive that we will NOT catch Covid.
There just isn’t a 100% guarantee, but Evusheld 2 (antibodies injections ) would give people who are at high risk still a lot of confidence. It isn’t available atm but hopefully this year. Other prophylactic antibodies meds also hopefully in the pipeline. I don’t have anxiety and hope others have that under control as stress depletes the immune so kind of counter productive.
I am not afraid to go out and neither are you. 🩷 There are so many things you can do safely and … we do! As I said before, we all do what’s right for us and that no-one should try make anyone else feel awkward or uncomfortable (yet often they try their worst!) if that doesn’t meet with their approval. One should let people breathe and do their own thing. 🩷x
I agree AC, a very miserable life for us if we spend the rest of it scared to go out or near people. I’m still aware it’s there and take some precautions but it’s not going to stop me living.
can I ask then, is it well known that a covid vaccine is likely to cause a flare?
(I’m playing catch up as although I’ve been having these issues for 4 years I’ve always been told I had long covid - now I’m putting the pieces together to find out I never had long covid- but arthritis instead)
If the vaccine is well known to cause a flare then that is going to explain an awful lot! Thanks
I've had every vaccine offered (8 or 9 so far? 🤔) and have never had a flare after one, nor have I had COVID. Apart from a sore arm, I haven't had any side effects either apart from this last time when I had flu-like symptoms for a few days - not pleasant but it wouldn't stop me having another one. I've probably just been lucky but I haven't read that the vaccines are well known to cause flares either.
No and I have never had a flare following any of my 10 Covid jabs.
However, I can understand a few people may have done. All I've ever suffered is a sore arm and possibly a headache or chills for 12-24 hours and I don't call that a flare!
I am on baricitinib and have caught covid three times first whilst on humira and very poorly. I asked the same question at my covid jab session and I was told that if I caught COVID on baricitinib I could be extremely ill and end up in hospital so I went ahead. Previous jabs have made me feel dreadful but this time I was ok. Everyone reacts differently but I thought for me the risk was too high not to take the jab as my first bout of covid left me with pneumonia and lung scarring.
I'm no expert but my partner is a medical statistican and has been working on covid reactions in international context. when i mention this question about covid and flares he keeps saying that it isnt a live vaccine and cant provoke a flare. Just repeating what he says, I;m imagining that people are thinking there might be an interaction between medication and the vaccine which could provoke it. ANyway I dont think flares are a common occurrence. CX
I’m absolutely no expert, but surely logic would imply that if something is designed to generate an immune response then it can equally generate a flare.
You said it! (Your partner said it too!) I believe that too. I’ve heard it called “inflammatory syndrome” which makes sense as it’s acting generally to ramp up the immune reaction. x
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