Hello everyone,
I’m going to have my seventh covid vaccine next week, I take the Jak inhibitor Filgotinib. My white cells and neutrophils occasionally dip but nothing spectacular. My question to the community is, is there a limit to the number of covid vaccines one can have?
Thanks everyone
The boosters are not supposed to be given sooner than 3 months for the immunosuppressed. I was way behind with the vaccines and boosters so still catching up, three monthly intervals last year, but May will be my third booster. It depends on how you feel about having a lot of Covid vaccines. Some people don’t want them anymore especially if they have had adverse side effects and some are happy to continue. A very personal decision. I’d always say discuss with your consultant especially if you’re on a higher risk RA med and also have other health conditions.
Thank you for your reply my last booster was October 2022 and Covid in December 2022 so I guess I’m ok to have one now.
The nurse/vaccination clinic/centre can call up your NHS/vaccine details and see exactly when you have last had one.
I had number 7 Two weeks ago. If the effects wear off I’d think no limits like flu jags .
I d say that was between your body and any experiences you’ve had plus received medical wisdom.
Personally from my own experiences following Moderna/ no more for me at this point. My body has had enough plus have had multiple covid infections and now long covid. We re all different I guess.
I was sorry to hear of your problems which you posted of recently. An awful time. I hope you are in a steadier place at present. 🙏🏻
I have just had my seventh. They obviously think the efficacy wears off after a time and statistics show RA makes us more vulnerable, so who knows how long this cycle may be recommended? I looked up the covid information yesterday; people are still dying with it being recording somewhere on the death certificate, over 500 a week I think. Personally, while ever vaccination is offered to me I will have it, but every six months seems to be the advice at the moment and yes, it does seem a lot and somehow has brought back the reality of my situation to me - I have a serious illness and am vulnerable. Manage usually not to think about it as I've been told I'm in remission. The vaccinations have made me happy to go out and about like "normal " people!
I’ve just had number 7. I’m on a biologic, MTX and steroids, plus strong steroid inhalers. The reason we are selected due repeated vaccines, is that we don’t mount the same response as someone who’s not suppressed. It doesn’t have a cumulative effect, as it’s been shown to wane in healthy individuals around 4-5 months, so you are just hopefully maintaining a level that keeps you safe. It always causes a short flare when I have it, but small price to pay. I think people wrongly assume covid is harmless now, it’s only due to the vaccines, albeit the strains have weakened over time, people are still on ventilators and dying of covid. There are currently around 400 deaths a month, and 200 on ventilators, so it’s still with us. I’m happy to keep being boosted, and not become one of their statistics. You could always do a private antibody test to check if your levels are low, to make an informed decision.
Just wondering about the deaths where covid is mentioned on the certificate. Government website today says over 600 in a week. You mention much lower figures. I must be reading it incorrectly. I do hope you are right and I'm getting it wrong! 400 a month is much better than over 600 a week!!
unfortunately I just noticed that the record I had was from early March, for some reason. It’s a woman I know who logs it weekly online. The current number is 696, so definitely on the rise again. Sorry, it’s normally very current, didn’t check the date, lesson learned 😢🤗
hi.
I too am on filgotinib now for past 5 weeks,and had my 7th jab on Tuesday.It was the new Sanofi vaccine so was a bit concerned.Just had a minor flare in hands and wrists for a couple of days,but that was all.Back to normal now though.Kept taking daily tablet as normal,as told to by rheumy nurse.As I have not had Covid at all,my take is that it is the vaccine that has kept me safe for last few years of Covid,so will take all offered!To me,a couple of days of discomfort is the lesser of two evils.Filgotinib is brilliant,no more injections,no side effects,and already less pain.Am hoping crp blood test shows lowering from 75 in June !How do you find it?
Filgotinib has been so brilliant for me such a huge reduction in my symptoms. Having said that I feel as if I’m starting to flare slightly so disappointed after 18 months of relative bliss. My nurse is leaving it up to me but thinks I need a steroid injection I’m leaving it another week…..sometimes it’s a guessing game!
Sorry to hear you're having some flares again after 18 months on FIL. I've been on it about 18 months too on 200mg/day doing well in terms of the RA alone (& had flares starting up when went 2 months on 100mg/day to try and reduce side effects). But back of the mind have a fear it may stop working, as can happen with all these drugs (but won't focus on that, but..!). I only just saw your comment above - have your flares got worse since you wrote 2 months ago? One more question - have you had weight gain? I've had enormous weight gain and in a state about it as completely changed body shape & don't wish to be like this forever! Go well X
this flare is settling now, thank goodness I was really starting to struggle. I do feel the Filgotinib has started to kick in again, let’s hope it works for a long time yet. I’ve been prescribed a rescue package of steroid should this happen again. Really wish I had the steroids a couple of months ago tho. I’ve developed psoriasis in one of my nails it does feel a bit never ending sometimes. I have started swimming which has been a huge benefit been able to exercise without the strain on my joints. I’ve had a couple of kilograms weight gain but that I’m sure is down to my love of crisps, chocolate and wine!! Sorry to hear your weight gain has been more….
Wishing you all the very best and continued success with Filgotinib
Thanks so much Pastels. Glad your flare under control & that you're not getting worse. Hope the psoriasis subsides...The swimming sounds great. It would do be a lot of good to do that regularly too, but my day/night habits are so eccentric now & I live far enough away from the pool to make it a chunk of the day & find it really difficult to make a big effort with things. But must make a plan! Yes, my belly wants all the grub & treats too - does not help! All the best to you too & long may the drug work for you, without adverse effects. Go Well ! X
Thank you so much for your reply much appreciated!
I had my 7th this week and just assumed that everyone there’s a booster I’ll get it.
All the repeat vaccines are doing are raising your level of antibodies in your circulation - rather like having lots of colds might. So there isn't any limit on how many you could have.
Some of the vaccines have now been slightly modified and although the results of trials show that they are only slightly more effective, they may help your body to make antibodies which are more accurately fitted to the more recent forms of the Covid virus to atack it better.
I've just read the various comments. Want to add that the covid virus is changing, there's new mutations all the time. I'm not sure the Moderna jab I had recently is formulated for the latest variation but I'd have thought that was a good reason for the NHS to offer us new jabs - just like for the annual flu. Personally I trust the public health authorities enough to go happily for a six monthly jab. Moderna makes me shivery a few hours afterwards and I have a sore arm and the next day I'm fine. C
Sanofi (I keep wanting to call it Banoffi!) is said to work on the (earlier) Omicron variants and a different way of a vaccine working. It’s a new vaccine but if offered to me in May I’ll have it.
I was just given Moderna. Will take anything me!
I’ll have the Banoffi vaccine! 😁 I don’t think I’d want AZ but it’s withdrawn anyhow. I’ve had Pfizer and Moderna.
I’d go for that too wonder what it does?
Supposed to trigger a stronger immune response. Let’s hope so.
😁
I’ve just had my 7th last Monday. I feel great and have never had Covid. I’m immunosuppressed with RA. I had a Pfizer booster. It was different to those given to those who were over 75 and not immunosuppressed.
Had my 7th (Phizer) on Thursday. Slightly sore arm and a bit tired but worth it in my opinion. I've been lucky enough to avoid COVID despite living normally 😊
Thank you for question it helps others to understand, I had a booster in September last year which is now more than six months past , so am advised by government guide lines I need another booster due to age and health vulnerability and being a past sheilder. Its all quite confusing for many . I like many are still waiting for a letter to book our jab from our GPs. Someone has to go first and someone last after all.
I’ve only had 5! And I had my first one early in late 2020, two in 2021 and 2 in 2022. So not sure how you are fitting all these in!!
I'd assume that the regulations are different in France? Here in Scotland the norm seems to be every six months for over 70s and immunocompromised.
Yes, It’s hard work getting them done in addition to all the other rheumy and consultant things and I’ve had double the amount of blood tests for the last couple of years. I have had two boosters so far but repeated my first two primary doses last year as in 2021 I had zero antibodies to both and severe hypogamma and other health issues. I think I’m due some non medical weeks/months where I just do nice things soon ... but first a dental extraction/op. 😑 Hope you’re feeling improvement now back on Enbrel.
(I’m whispering this very, very quietly so as not to annoy the drug gods, but Enbrel seems to be working again! )
Here my pharmacist tells me when I’m due one..)
(whispering too ... I’m very glad to hear that!)
Hi Pastels, I am from the US and I am amazed UK is having Covid vaccines more than three. Some have had the third as a booster and maybe fourth that I have not heard of. Covid has not been an issue here. This past winter a lot of folks came down with the flu and some had the Covid virus but it has been said the flu was worse than Covid.
“Covid has not been an issue here” !! The US has had the most covid deaths of any westernised country.
I have a 7th vaccination appointment next month. I'm a big supporter of vaccinations, but the 5th one I had reduced the efficacy of my Toficitinib and I had to change meds.I'm now on Filgotinib and am a bit reluctant to take the 7th. Still considering.
I’m having my 7th tmoro this one’s a spring vaccine, it depends on how long covid lingers on it’s just because we’re vulnerable
I'm booked in for my 7th vaccine a week on Wed (10th may) my mum had hers yday as she over 75yrs old & was given the new vaccine. All I know is I don't want maderna again it caused a bad flare. So will accept the 7th & see how I react. I'm on Retuximab infusions every 6mth.
I'm starting to think of it like my flu jab only biannual instead of annually. , I must have has more than 6 flue jabs in my life time, but this covid jab will be my 7th too
I'm on my 7th this week , I think it's best to have it as not. Really couldn't cope with it on top of unstable blood pressure and fingers crossed a new hip. Several members of my family have had covid and been really poorly so I feel its better to have it when offered.
thank you for replying, I think I’ll go for it!!
I've had 6 and I'm of the option that's as far as I want to go with it at this present time. I had no side effects with any and should covid come back with evengence I would reconsider it
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