Covid Vulnerability- Baricitinib vs Rituximab - NRAS

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Covid Vulnerability- Baricitinib vs Rituximab

11 months ago•73 Replies

Hi All,

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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73 Replies

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Runrig0111 months ago

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

thelancet.com/journals/lanr...

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.

medicinehealth.leeds.ac.uk/...

welsh12• in reply toRunrig0111 months ago

Is there research on outcomes for those on methotrexate

Runrig01• in reply towelsh1211 months ago

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.

pubmed.ncbi.nlm.nih.gov/347...

MTX

welsh12• in reply toRunrig0111 months ago

Thanks

OldTed60• in reply toRunrig0111 months ago

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.

MadisonCounty• in reply toRunrig0111 months ago

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.

Jlwgsw• in reply toMadisonCounty11 months ago

I had covid and was soon as I felt better I should have my vaccination and I did and had no reaction to moderna.

MadisonCounty• in reply toJlwgsw11 months ago

Thanks, good to hear!

cathie• in reply toJlwgsw11 months ago

Good advice. What with long covid it’s best to be careful

Seatgeorge• in reply toRunrig0111 months ago

That was very interesting thank you for the information.

Claireybee• in reply toRunrig0111 months ago

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 😊

Jlwgsw• in reply toClaireybee11 months ago

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.

AgedCrone• in reply toRunrig0111 months ago

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 .”

Claireybee11 months ago

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.’

AgedCrone11 months ago

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.

Claireybee• in reply toAgedCrone11 months ago

Thanks for taking the time to reply and share your experience. It’s helpful

bpeal1• in reply toClaireybee11 months ago

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.

cathie• in reply tobpeal111 months ago

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

AgedCrone• in reply tobpeal111 months ago

But have you discussed how close to your infusion you have the vaccine? If your B cells have not repatriated..it will make a difference..

bpeal1• in reply toAgedCrone11 months ago

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.

Claireybee• in reply toAgedCrone11 months ago

I was advised that it needed to be more than a month before or 4 months after.

bpeal1• in reply toClaireybee11 months ago

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.

Neonkittie17• in reply toClaireybee11 months ago

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. 🩷

Claireybee• in reply toNeonkittie1711 months ago

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 😏

Neonkittie17• in reply toClaireybee11 months ago

That’s usually very much a good sign! It’s not always easy juggling the med and the vaccine that’s for sure. 🩷

AgedCrone• in reply toClaireybee11 months ago

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.”

bpeal1• in reply toAgedCrone11 months ago

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.

AgedCrone• in reply tobpeal111 months ago

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.

bpeal1• in reply toAgedCrone11 months ago

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.

Neonkittie17• in reply tobpeal111 months ago

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

Lolabridge• in reply toNeonkittie1711 months ago

Absolutely agree - your final sentence sums up my opinion too! 😍

Neonkittie17• in reply toLolabridge11 months ago

No one should ever make another person feel awkward or uncomfortable about anything, especially pertaining to their health. 🩷

Claireybee• in reply toAgedCrone11 months ago

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.

Lolabridge• in reply toAgedCrone11 months ago

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.

Neonkittie17• in reply toLolabridge11 months ago

I listen to Professor Stephen Griffin and Professor Christina Pagel as they tell the truth even if others don’t want it hear it. x

Neonkittie17• in reply toNeonkittie1711 months ago

Sheena Cruickshank too (think she’s at Manchester Uni)

Neonkittie17• in reply toLolabridge11 months ago

Again, I agree with you , Lola.

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.)

AgedCrone• in reply toLolabridge11 months ago

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………..

Neonkittie17• in reply toAgedCrone11 months ago

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.

AgedCrone• in reply toLolabridge11 months ago

JUST WHERE DO I SAY “IT’s ALL OVER.”?

This 🔽 is what I said……

“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

Liberty43• in reply toAgedCrone11 months ago

I believe the 2 scientists you mention are well known anti valuers. Please check this out for yourself.

AgedCrone• in reply toLiberty4311 months ago

NOT ME!

Check what you read …l didn't mention any scientists.

Lolabridge• in reply toAgedCrone11 months ago

Profs Sikora and Gupta are both scientists and medics!!

Neonkittie17• in reply toLolabridge11 months ago

😳

Neonkittie17• in reply toLiberty4311 months ago

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. 😑

benhemp11 months ago

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 . . .

cathie• in reply tobenhemp11 months ago

Protection doesn’t last that long. So that’s why we’re offered boosters

Neonkittie17• in reply tocathie11 months ago

Exactly this and why my immunologist said …. you need to keep nudging your immune. x

Neonkittie17• in reply toNeonkittie1711 months ago

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

Claireybee• in reply tobenhemp11 months ago

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.

AgedCrone• in reply tobenhemp11 months ago

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.

Neonkittie17• in reply toAgedCrone11 months ago

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.

Lolabridge• in reply toAgedCrone11 months ago

I would rather not rely on hopium like you AC especially now we are in a new wave of Covid with the FLiRT variants becoming dominant.

Neonkittie17• in reply toLolabridge11 months ago

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

KittyJ• in reply toAgedCrone11 months ago

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.

AgedCrone• in reply tobenhemp11 months ago

Me too!

Tealblue211 months ago

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

Boxerlady• in reply toTealblue211 months ago

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.

Lolabridge• in reply toBoxerlady11 months ago

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!

Neonkittie17• in reply toLolabridge11 months ago

Exactly the same as you say, and no it isn’t a flare. Just a reaction. x

cathie• in reply toBoxerlady11 months ago

I’m the same. Sore arm, shivers. Tired but just for a day. I’ve had all that’s been offered

KittyJ• in reply toTealblue211 months ago

I’ve never had a flare after covid jabs either.

Neonkittie17• in reply toTealblue211 months ago

I’ve never had a flare as such and I’ve had ten vaccines, but we all react differently.

Green23046111 months ago

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.

Hope you get on okay. Keep well 😃

cathie• in reply toGreen23046111 months ago

Good thinking. I think of the resources we use up if we get ill. Best to take jabs if offered

Green230461• in reply tocathie11 months ago

😀

cathie11 months ago

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

Claireybee• in reply tocathie11 months ago

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.

AgedCrone• in reply toClaireybee11 months ago

It can only generate a response…if there is something to respond…..& if there are no antibodies………………

Neonkittie17• in reply tocathie11 months ago

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

cathie11 months ago

a reaction but not necessarily a flare? I don’t know at all but I’ve had all vaccines offered and never flared

Neonkittie1711 months ago

Such a reaction could mimic a lot of symptoms synonymous with an RA flare so understand why it is thought by some people to be so.