Did you stop your biologic for 4th vaccination? - NRAS

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Did you stop your biologic for 4th vaccination?

66 Replies

Finally have my 4th jab booked for next Thursday 13th Jan and am trying to work out whether to stop the Adalimumab for two weeks before and after or not. Have had conflicting advice from sensible sources. Rheum nurse said to inject as normal as would be worse to flare and pointed to the versusarthritis site which says the same. But then information on other reputable websites states it is best to leave a two week gap either side.

Would people mind sharing what they were advised/decided to do? I‘m not sure whether it might not be better to pause it and give the vaccine maximum chance to work….

Thank you x

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66 Replies
Summerrain14 profile image
Summerrain14

I understand your dilemma and have had the same myself. I had my 4th covid vaccine on the 30th Dec. So it would have been the 1st Jan for my biologic which is the same as yours. I am delaying my biologic by a week but mostly due to just recovering from pleurisy too. Sorry I can’t be much help. x

in reply to Summerrain14

Thank you! I hope you are feeling better?Most research seems to suggest it‘s on to continue the aTNFs but then I still worry it might decrease my chance of a good response!!

Hope you are ok x

Summerrain14 profile image
Summerrain14 in reply to

I had the same thoughts as you and the same advice as you lovely so really don’t know what the right thing is to do. I’m getting there thanks lovely x

Mmrr profile image
Mmrr in reply to Summerrain14

Thinking of you Gail, I hope you are a bit brighter.

MadBunny profile image
MadBunny

There are so many different opinions 🙄

I was told by the nurse before my first jab to miss it for 2 weeks either side . However, she did say that was only because I was in remission. And that was back in December 2020 when they didn't really have any information.In the letter I recently got from the rheum dept, JCVI are recommending stopping 2 weeks before the vaccination, but if your RA is active or you're having a flare, consult your rheum team.

Mmrr profile image
Mmrr

There seems to be a bit of a divide in the advice regarding stopping medications or not prior to vaccination. On the pre Christmas NRAS update the general advice was not to stop unless advised to do by your rheumatologist.The drugs causing the biggest concerns are rituximab (by far), steroids (next in line) and then the JAK inhibitors.

Other advice says contact your rheumatologist for advice, but they are swamped and not giving out advice unless there is a specific issue to be addressed.

My RA is not well controlled, I'm on steroids and a JAK inhibitor, but personally decided not to stop my JAK as a flare would almost certainly ensue and be an even bigger problem for me.

So I guess, unless your rheumatology department are giving out advice it really is a personal decision.

AgedCrone profile image
AgedCrone in reply to Mmrr

If you read a couple of case studies re Rtx & Covid vaccinations you could scare yourself witless!I read one really long winded report of a 70+ year old male…who had every side effect going…..then when you read his case history prior to vaccination , he had Type 1 diabetes, cardiac & pulmonary problems & was obese.

The miracle was he recovered & is doing fine!

So I’m having my Rtx infusion next week….just hope I do fine….as I did with my second Primary vaccination after Rtx in April.

Fingers firmly crossed!

in reply to AgedCrone

Fingers crossed for you too 👍🏻 I know, if you have a look especially without double checking the details you can definitely cause panic.

I think I was expecting to get the 4th after a 6 month gap when I would have stopped the Adalimumab anyway as third trimester so I was caught by surprise. Then after all the various treatment and pregnancy stresses I think I managed to panic myself! Anyway, having had a calmer look most guidelines seem to suggest continuing aTNFs and state avoiding flares is most important which is exactly what my rheumy nurse said - and they have looked after me very sensibly so far!

I hope your jab and treament cycles go ahead without problem and maximal effectiveness. Fingers crossed no positive covid tests all round 🤞🏻

Thank you for your reply and thank you to everyone who replied to me so kindly it’s much appreciated. Xxx

cathie profile image
cathie in reply to AgedCrone

I hope your infusion goes well. Just a thought, when I had mine at the beginning of December the man next to me said he was excused wearing a mask. Now with the new variant being more transmissable I would have discreetly asked to move as I dont fancy being exposed for upwards of 4 hours. This might give you time to think if it concerns you.

AgedCrone profile image
AgedCrone in reply to cathie

Damn discreet……he should not have been close to anybody in a hospital setting.,….I wouldn’t care if he did have respiratory problems…he could still infect others….even if he had a test that day…...he could be incubating the virus.I think you were very brave to stay…

I would have not been willing to sit even near to him…I’m usually there including pre infusions for 6/7 hours….you can breathe in a lot of germs in that time.

We are all taking every precaution…..I’m not chancing catching Covid in a hospital…even if I do have to make an exhibition of myself to stay safe.

I’m surprised the nurses didn’t put him somewhere completely separate from vulnerable people.

My masks are glued to my face…the last time I had an infusion ….as far as I could see one lady was not wearing a mask….but she was in one of the side cubicles & was on Oxygen….so fair enough no mask! 😀

Hope you are all OK.

cathie profile image
cathie in reply to AgedCrone

You're absolutely right. Next time I will kick up a fuss. He did apologise but given that we were both getting Rituximab, one of the meds which renders the jags much less effective, I would have been more than justified. But it was before Omicron and things seem more transmissible now.

I've just cancelled a routine scan until after my booster jag - well I phoned to cancel it but the Doctor in charge had already cancelled it for me, it'll be rearranged for later.

AgedCrone profile image
AgedCrone in reply to cathie

Luckily I’m 90% in remission…I have gone nearly 9 months since my last infusion…in fact I think I could wait a bit longer…but I have still only had three Primary vaccinations…...I waited 6 months for the third as the first two AZ gave me nasty side effects…but the third Pfizer..,,…was no problem, & rheumy says keeping the remission going is more important than the booster…but that’s just for me.He has kept me sorted for years…so believe him.

Mmrr profile image
Mmrr in reply to AgedCrone

I'm going for an x ray today and quite correctly was asked questions regarding did I have any Covid symptoms before the telephone booking was accepted. I've also taken a LFT this morning, which was negative, and informed the receptionist of that too. Not interested. I asked if all staff that I will be in contact with are vaccinated, and have had a negative LFT this am, to be told the information is not known.

AgedCrone profile image
AgedCrone in reply to Mmrr

I have to go for a PCR on Saturday…then get to the clinic 30 mins ahead of my infusion to have a LFT 3 days later.I don’t know if that is because they don’t trust patients to do that test correctly…or if it’s because there are still no LFT’s available to the public anywhere in this area

I suppose trying to send just one test would be time consuming…& knowing the post here….it would take a week to arrive.

Everything to do with Covid prevention & other hospital treatments needs a jolly good Administrator to get a grip…but the obvious has never occurred to the NHS….especially when something that SOUNDS so efficient is already failing so spectacularly!

Mmrr profile image
Mmrr in reply to AgedCrone

As we both know , either everyone undertakes the prescribed mitigations....checking for symptoms, being vaccinated and so on...or we don't. Some undertaking mitigations and some not, simply doesn't work. We have 1000s years of epidemiological knowledge to know this.

AgedCrone profile image
AgedCrone in reply to Mmrr

Tbh..I think the time is very nearly here…when everyone…vulnerable or not…is required to think for themselves…& do the right thing,

We have been told time & time again by the scientists that mixing too closely with strangers DOES lead to transmission…but still people go to nightclubs, football matches & all manner of social occasions that can cause them to catch/spread Covid…often to someone who has taken every precaution.

Just because the Government says they can.

The times I have heard the old & the young say “Oh we have got to have some fun”

Yes…..,but maybe not right now?

We cannot expect people diagnosed with cancer & other serious diseases…. to just wait until nobody is presenting with Covid. …before physicians & surgeons can get on with diagnosing & operating on these unfortunate people.

I had cancer…and looking back…I would have been devastated had I been told “Yes you have cancer……but Fred is in the last bed in the hospital..,cos he caught Covid watching football…..,so sorry, but you have to go home & wait for a bed”.

I know that might sound harsh & selfish…but if everybody looks at their loved ones…& thinks “if he/she gets cancer tomorrow…they won’t get treatment”. … maybe people would be more willing to do whatever it takes to stop the spread of Covid…even if it means not doing everything they want to do right now.

I know that will not be popular…but just look where what has been done has brought about,…..putting it politely…Chaos!

Rant over!👩‍🦳

in reply to AgedCrone

Oh my word I so agree. My sister is medical as am I an works in trauma surgery but also has to cover covid and says she is literally at the point of wanting to cry when she gets called in the middle of the night for eg people having had a brawl post football match - drunk, positive and often unvaccinated…Thinking for yourself seems to be getting confused with thinking about yourself 🙄

AgedCrone profile image
AgedCrone in reply to

You are right….but as I said….it’s not a popular view is it?Until we all get the message…this virus is going to continue disrupting the NHS…..& all those here needing to see …or even just get advice from their rheumatologists ….will just have to continue waiting.

We here are all on treatment …even if the not the right meds quite yet….so we have all got to make big effort to make sure everybody who needs medical advice can get it….especially the newly diagnosed who need to get on the treatment ladder…..& that means helping ourselves as much as we can.

Mmrr profile image
Mmrr in reply to AgedCrone

Absolutely agree AC.I really don't see the problem in leading a bit of a quieter life for now, small carefully chosen groups with people undertaking LFTs prior to meeting up. Transmission will still happen of course, but less so, the vulnerable are protected (and may choose to make different choices) and others can still have a bit of fun. Our public services would gain protection too.

I really struggle with my own morals of unvaccinated Covid patients taking up ICU beds, and precious other resources. Part of me wants to say send them the bill if they recover...then my health, psychology and humane views click in.

Any civilised society must offer care to those in need.

And, we all undertake behaviours that create health problems...a broken leg from skiing, type 2 diabetes from obesity and dare I say perhaps smoking and RA.

AgedCrone profile image
AgedCrone in reply to Mmrr

Thankfully I’m only guilty of one self inflicted behaviour on your list….broke a leg skiing..but have escaped the other three….so far!!

The way I see it now ….if I or any of my vaccinated loved ones do catch Covid …it will be milder than the unvaccinated & progress the so called herd immunity & this time next year there would be enough confidence for those now too worried to go out,,,,,to get on with their lives….which we have to do.Also….right now the media is revelling in terrorising those worried well…& until that stops it will be nigh on impossible to instil the necessary confidence to just get the hell on with life.

Every night I watch the numbers of “Covid” deaths stack up..& I know from personal experience that some of those figures include the old & sick….who would have died anyway..

A friend’s death certificate stated he died if prostate cancer, pneumonia & Covid….he was 89.

He was never tested for Covid,….his wife sat by his side in hospital for 48 hrs…she would have known if he was tested…she too was never tested & didn’t develop Covid.

It will be very interesting to see Professor Sekora’s analysis of the published Covid deaths …I think due in the Spring.

We must all get back to work…if we ensure employer’s step up & make the workplace as safe as possible….& children can get back to school safely….….if only they weren’t constantly told how hard done by they are.Nobody set out to deny kids their education…it was just such an unknown quantity ….nobody knew what to do for the best.

My hard done by…was being dragged to an air raid shelter at 3am, whilst bombs were dropped at the end of the street…& we still had to get up & go to school…..& we survived….& got an education.

Mmrr profile image
Mmrr in reply to AgedCrone

Yup, and dare I say this....for fear of upsetting anyone.But, I do believe we have created a situation where people have all but been told by Governments and the media frenzy, that they should not be coping mental health wise...cognitive priming...rather than most people will do just fine mental health wise.

I've said before on the forum, in my experience it has been the more affluent who have not coped, an interesting research question might be...have they been more influenced by Government messages than the less affluent who by and large have just had to get on with it, and not listened to the government messages (lots of variables in there, I know).

I'm not denying or trying to diminish personal experiences of depression, anxiety, social anxiety perhaps, fear and so on, but feeding people information that they won't / can't cope is most odd. I do wonder about the behavioural scientists advising government at times and the largely negative messages given out.

AgedCrone profile image
AgedCrone in reply to Mmrr

Even before Covid I often wondered why so many children these days seem to need special schooling…a family member who is a headmistress says they don’t…but it covers up the lack of teachers & of decent planning for normal schools…so no funding is there for improvement.

Of course all the publicity generated by people in the public eye describing their mental health traumas doesn’t help……..if you are minded to believe them.

Especially as a lot if their tales are from way in the past.

Unfortunately those giving out advice often live in comfortable surroundings & their little darlings have every tech gadget going & the nanny does the home schooling.Whereas in real life both Mother & Father work & granny has to referee the kids …that is their home schooling,…..not really satisfactory.

The affluent could cope..but they prefer to emphasise their lack of going on the world cruise …it salves their consciences…..because they know full well they will probably escape Covid..because the places they frequent still manage to operate safely….& they aren’t stuck in a bed sit living on microwave meals….from a food bank….existing on very little income.

We comment & criticise…but I wonder what can be done now?

Some people appear to have convinced themselves they have to hide away or Covid will “get”them……letting loose of that idea is not going to be easy.

But we really do need some sensible guidance…to stop being told we “must” do this that & the other….we have to work it out for ourselves……

Ah well ….back to my attempt to construct a flatpack little table…just wish I hadn’t bothered!

in reply to Mmrr

I completely agree. Sadly a large amount of people seem concerned with what is east for them only 😢

nomoreheels profile image
nomoreheels

I couldn’t do that as I’d flare if I was 4 weeks off my MTX. I appreciate it's not an anti-TNF but surely you'd be risking similar, it's a long time off any anti-TNF or even cDMARD. It's the hoping for a good response I know. Is there no middle ground? As it's a fortnightly dose if you choose not to follow your Rheumy Nurse's recommendation wouldn’t just not injecting post vaccine be the better option? Not sure I’ve been any help at all, sorry.

in reply to nomoreheels

It is helpful! The general statistics seem to say it‘s ok to keep on with the aTNF but yes maybe injecting as planned a week before and then holding off for an extra week after the jab might be a compromise.Flaring isn’t fun and puts you at greater risk of covid complications it seems and I‘m also trying not to flare as 17 weeks pregnant and losing the last pregnancy was put down to active RA by one of the SpRs.

I get the impression nobody really quite knows 🤷🏼‍♀️

Thank you x

nomoreheels profile image
nomoreheels in reply to

Oh good. I nearly added it could put you at greater risk of serious complications of Covid but didn’t want to seem to be scaring you into one option or another, but seeing as you mentioned it…! Ah, now, being pregnant having lost your previous one (so sorry) gives another angle as to what you should be doing possibly? Maybe you should be involving your Midwife, given what the SpR said, or was your Rheumy Nurse aware of your history & was basing her recommendation on this also? Sorry for additional questions.

nomoreheels profile image
nomoreheels in reply to

Do you think the calling NRAS helpline might be a good idea? It's 0800 298 7650 Mon-Fri from 9:30am to 4:30pm. They may have more idea, or know where to ask given you have more than RD to be concerned about.

in reply to nomoreheels

Thank you! I might try the midwives but in my experience so far they generally seem to panic when you mention immunosuppression 🤣 I think my nurse does know about the prior pregnancy loss but whether he also attributes it to poorly controlled RA who knows 🤷🏼‍♀️. Again it seems to be one of those areas of many opinions!

I’d like the option of no flares and no covid please ✅ 🤣 This poor baby is going to come out with Pfizer/BioNTech stamped on its forehead.

Thank you for all the helpful thoughts!xxx

nomoreheels profile image
nomoreheels in reply to

Aw bless. It's a real rock & hard place you're in. I hope whatever is decided best for you & your baby is clear & you keep safe either way. Please don't let them stamp anything on baby's head, unless it's WELCOME LITTLE ONE. ☺️

in reply to nomoreheels

Am going to go with trying to tell myself any option will be safe 🤞🏻 Hopefully a baby grown on a combination of anti-sickness medication and Pfizer should be tough as old boots 🤣

Thank you so much for all your kind messages 🥰snuggles

nomoreheels profile image
nomoreheels in reply to

You're welcome. Let us know what is decided & hope you keep well.

in reply to nomoreheels

Thank you!And no idea why the message above says snuggles 🤣 emoji gone wrong??

nomoreheels profile image
nomoreheels in reply to

Haha, & there was I enjoying them! 😉

in reply to nomoreheels

Feel free 🤣

bpeal1 profile image
bpeal1 in reply to

Sorry to hear of your previous miscarriage. Just wanted to say I know how worrying pregnancy is after miscarriage but there is hope. I had two miscarriages, and after the second my rheumatologist thought they might be due to RA. With her care and support I then carried my son to full term (well very nearly they induced me a week early to reduce increased risk of being over due). I remained on sulphasalazine throughout plus had steroid injections as needed to stop me flaring. I also took aspirin throughout to thin my blood. He is now a very healthy active 12 year old!

My rheumatologist thought the RA was making my blood too thick which was causing the miscarriages. Something to do with too many antibodies.

in reply to bpeal1

Thank you for your kind responseAm definitely finding it pretty stressful - then add covid 🙄 xxx

bpeal1 profile image
bpeal1 in reply to

Yes I’m very thankful that I didn’t have to contend with Covid too!

chunkypie profile image
chunkypie

I'm on Adalimumab and my GP refused point blank to class me as vulnerable. I asked my consultant and they said they give the information to GP and its up to my GP how they categorise patients.I only got the jab once i was in the over 50 group and only had my had my booster two weeks ago.

in reply to chunkypie

That doesn’t sound right - I‘m so sorry! I hope you can get that changed. Can you complain and send a copy of the relevant pages of the green book?

chunkypie profile image
chunkypie in reply to

I've given up with my GP tbh lol. Regarding the Covid jab i continued to take my biologic as normal. I take my biologic every two weeks .The only thing i did was to book my covid jabs in between those injections so they was not on the same day.

wishbone profile image
wishbone

Rheumy advised me to stop baricitinib for 2 - 3 weeks after the 3rd vaccine. Can't see it being any different for the 4th vaccine so will do the same for this one unnless told different.

in reply to wishbone

Ah that’s interesting - was it only afterwards, not beforehand?Thank you x

wishbone profile image
wishbone in reply to

Just after.

By coincidence I'd only restarted my baricitinib 3 days before my 3rd vaccination after being off it for the previous fortnight because of a throat infection. I stopped baricitinib for just 2 weeks after the 3rd vaccine but probably would have completed the 3 weeks if not for the previous 2 week break.

Bails67 profile image
Bails67

I was sent a letter from consultant with all the guidelines on injecting . It does say to inject as normal. My nurse said she wouldn’t inject the same day as boaster but that is really up to me!

Guidelines
in reply to Bails67

Thank you that is very reassuring. Seems most clinical teams themselves are advising to just continue as normal 👍🏻 thanks for this x

Hi there. Not on TNF -but I believe Mycophenolate, the immunesuppressant I’m on, is second most suppressing next to Rituximab.

So I took 3 days off prior to 4th vac/ booster and then a week off after my 4th. I didn’t really get much about this from UK sources but I read up on a US study and I did ask the rheumatology registrar on phone last year shortly before getting my 3rd. He said it wasn’t the advice they generally give but if I wanted to stop to give myself maximum chance of mounting a response then take one week off from the morning of the vaccine.

What I can say is that this was the first time I’ve had any significant side effects after and I was in bed for a whole day with a high temperature and flu-like aches. I’m taking this to be a good sign.

I think this was the link I read although maybe only relevant to my own treatment but it says 2 weeks - one before and one after the vaccine. pharmatimes.com/web_exclusi...

in reply to

Really hoping for you all the side effects mean you have mounted a good response 🤞🏻. Thank you for replying x

in reply to

Thank-you. On re-reading that pharma paper I attached, I note it says anti TNFs don’t make a significant difference to vaccine response - so perhaps just take a day off?

MrsSBJ profile image
MrsSBJ

I took all my drugs (metoject Etanercept small dose prednisolone) just as usual for all 4 doses. Rheumatologist advised that in 2020 and my disease isn’t fully controlled and I didn’t want to risk any worsening.

in reply to MrsSBJ

Thank you, that seems to be the clinical consensus 👍🏻 Take care x

Mandalou profile image
Mandalou

Hi Gif

As Mrs SB above, I’ve taken all of my Benepali injections as normal with all three jabs just because of the day of the week I inject. ( Saturday) Now I’ve got my 4th tomorrow so will just delay my Biologic injection a day so will take it Sunday or if I react to the 4th then will push it another day.

It’s that thought of it bringing on a bloody flare that’s annoying but my 95 year old Mum currently has Covid and I was with her in very close proximity leading up to her testing positive so all I can say is thank you vaccinations!

Mum is doing ok too fingers crossed.

Good luck with your decision, it’s complicated for you, I wish you the best in staying safe and healthy.

Mx

in reply to Mandalou

Glad your mum is ok!!Yes, my kids had covid in November as did. my husband and I didn’t catch it! Thank goodness for jabs

Thank you again x

Evie3 profile image
Evie3

I am on Rituximab and was told needed 2 week interval. I guess the rules will b different for each drug….sorry not helpful to u ☹️

KittyJ profile image
KittyJ

Just do what you did with the other three. Why do you need to do any different?

in reply to KittyJ

I was on methotrexate and steroids for the first two and was definitely told to pause/delay steroids and then there was a delay with my first adalimumab delivery and a big fuss was made trying to ensure I had my 3rd prior to starting the Adalimumab…just then surprised and a bit unsure when told not to pause. But it does seem this is the way. Sorry, I wasn‘t very clear! X

swansea-c1ty profile image
swansea-c1ty

I had my 4th on the 27th December and did not stop my biologicals on any of the vaccines

in reply to swansea-c1ty

Thank you!!x

Slinkyminx profile image
Slinkyminx

Hello. I am on bariticinib a JAK inhibitor so different from your biologic but I took the daily tablet up to the day before then stopped for two days, the day of the fourth vaccine and the day after. Like you my nurses said to keep taking the bariticinib but I felt it would give the vaccine a chance if I stopped for couple of says. No flare yet! When I stop bariticinib for more than four days I flare so chose two days. Good luck

wishbone profile image
wishbone in reply to Slinkyminx

I'm also on baricitinib,. Not had my 4th vaccine yet, but my rheumy advised me to stop it for 2 - 3 weeks after my 3rd vaccination, none before. Yet to hear from rheumy if anything has changed for the 4th vaccine.

Slinkyminx profile image
Slinkyminx in reply to wishbone

Thanks for replying, I’m going to stay off Bariticinib for one week following this fourth jab. I most probably will have a flare but I think it’s worth it to build up a response to covid. Each of us are so different with the severity of our RA our nurses know us best I suppose. I am also on hydroxychloroquine which I haven’t stopped and prednisolone which I have kept going. Let me know how you get on x

AgedCrone profile image
AgedCrone

I’d listen to the rheumy nurse who knows you …rather than websites that can only generalise.

in reply to AgedCrone

You’re right. Moment of panic but that is definitely the most sensible advice!

Denise64 profile image
Denise64

Hi So glad you brought this up I'm due my 4th vaccine on the 20th January.

And I've literally only just gone back on benapali after being off it for about a month with having flu.

And I personally would leave injection just before n a bit after vaccine to give best chance of working.

But with only just going back on it it does bother me postponing it again .

But I know Rheumatologist team will say do not stop it , but I've heard others saying to stop ,where can we get the correct advice?

Very confusing

Dee x

in reply to Denise64

Thank you - that sort of sums up my dilemma! I hope you decide on something and that it feels ok for you xx

Denise64 profile image
Denise64 in reply to

Same to you, I'm going to gather like yourself as much info as possible and then just make a decision after all these illnesses at times are self managed so we are used to making choices and making decisions Good luck x

Knit12 profile image
Knit12

My rheumatologist told me not to take meds day before, day of and day after for my 3 rd jab and it worked fine. Will also do same for my 4th which I get in 2 weeks.

Best to contact your rheumatology team and ask them

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