To boost or not to boost?

[JAC1947]

I have been offered my 6th Covid booster jab, but PMR came on after the last jab. I am very reluctant to have another now, but what say ye all? Thank you in advance.

[DorsetLady PMRGCAuk volunteer]

Your choice of course - but as we know covid is still with us and likely to be for some time….and the effect of your last booster is waning…

As proven by many reporting recent cases of virus…. I had it a few weeks ago - fortunately a very mild case and although no longer have GCA nor on Pred, I will be eligible on age grounds, so will accept. ….

You are likely to get some for, some against….

Recent’s post on same subject - healthunlocked.com/pmrgcauk....

[JAC1947 in reply to DorsetLady]

Thank you Dorset Lady.

[SnazzyD]

It’s a very individual choice I think. I won’t be having more because I had the same neurological symptoms that increased with each of my three doses. The last took three months to subside but I still get ectopic heart beats. My GCA was not triggered at all. I’ve been wondering about having another if there is a more worrying variant but is reporting good enough now to gives us enough of a heads up? Saying that, we haven’t been well since we had Covid in July ‘22 and think we had a high viral load that we couldn’t avoid. It’s a pig of a choice!

[Grammy80]

As others have wisely said, after weighing all the factors, the decision is yours. At age 82, I'm going to check and see if it is available in the States. I was hospitalized because of asthma from December 28th to January 8th, and I don't want Covid to find me~!! Recently a friend, who is 81, got it. She still sounds congested after three weeks and is very tired. I appreciate your hesitancy after what happened before. Can you check with your physician?💞

[Bcol]

A personal choice, as always, but unless something comes out of my upcoming heart scan, and the docs recommend that I don't have the booster, if/when offered I will be accepting. The previous jabs gave me no bad reaction and although I did get Covid last October it was very mild and I put that down to being up to date with jabs so far.

[Downtime]

I decided after 3 that was enough. I had covid last year and it was over quickly without any problems. I’ve had rheumatoid arthritis for 8 years and developed PMR last June which may or may not have been as a result of the vaccine, I take steroids and methotrexate.

[Jayveedee]

I haven’t had any of the vaccines and was lucky enough to finish taking steroids last July. I did catch covid in Italy last October as did my friend travelling with me who had 3 jabs. We both had the same symptoms and recovered after the same length of time. Apart from tiredness and a nasty cough it was like a bad cold which I treated with over the counter medicine.

[Sandradsn]

I'm on day 3 of Covid and feel really ill. It is definitely still about .Unfortunately people don't seem to be testing now so assume 'it's just a cold'.I think I caught it from a friend who said 'I don't want to know if its covid'.If I'm offered a booster I will say yes! I don't want this again for the 3rd time,its nasty!

[Kendrew]

Hi JAC1947,

I have actually had 6 covid vaccinations in total

2 Astra Zeneca, 2 Pfizer, 1 Moderna, 1 Pfizer Comirnaty.

I experienced no side effects after the first five but suffered 2wks of very alarming ectopic beats after the Comirnaty one. This resulted in an appointment with my cardiologist but also thankfully an eventual satisfactory outcome.

Despite understanding the very real risks of abstaining from this next booster, I also now understandably feel very apprehensive and somewhat anxious too.

I have to weigh up the individual risks involved with both my options and this is definitely not an easy choice to decide.

I'm fully aware that the vaccinations have a cumulative effect and missing one could diminish that effect.

I also appreciate that other people's experiences of catching covid are completely immaterial as until we catch the virus ourselves, we've absolutely no way of knowing how it'll effect us individually or how sick we'll become.

I have ex colleagues working in primary school who've caught covid twice (& a few even three times.) Despite being vaccinated they've actually been more unwell with covid on each consecutive occasion.

This obviously isn't the case for everyone who succumbs more than once, but for me, it's another factor to have to process.

This is always going to be a debatable topic and as individuals with our own unique set of 'circumstances' there's no right or wrong answer...... just an individual choice based on what we each perceive to be our greater risk!

[Flivoless in reply to Kendrew]

Crikey, I hadn't realised the vaccines were addictive!

[Kendrew in reply to Flivoless]

Haha!.... I'm assuming you were making a joke there as the vaccinations most definitely aren't addictive! Sometimes difficult to interpret the true 'intention' of a text.

[Flivoless in reply to Kendrew]

Yes, a joke of course.

[Kendrew in reply to Flivoless]

😆😂😆😂

[PRL1957 in reply to Kendrew]

You make some very good points, especially that we do not know how we will react to covid until we catch it - and even that might not tell us about how we will react next time.

Particularly worrying is that vaccinations do not prevent infections, and subsequent illness may be worse than the previous.

It is a pity that the pharma industries cannot come up with a vaccine that offers a good level of protection for more than a few months! Does anyone know why?

[PMRpro Ambassador in reply to PRL1957]

Partly because like all viruses it mutates. That is why you need a flu jab annually as well and it is only annually rather than bi-annually because flu is very seasonal and the vaccine is given in time for the start of flu season in your part of the world. If you were to head off on holiday to the other side of the world in their flu season you wouldn't be as well protected as the effect is waning by then - it is also why you shouldn't have the flu jab too early.

It may have been your Covid jab that triggered your PMR but it could have been the flu or shingles jab instead or Covid itself or one of the other potential insults to the immune system that are credited with contributing to the development of PMR.

In my case I had a mild flare with the second Moderna jab but none of the others had any effect on the PMR. However, the bivalent Pfizer booster last November triggered a resurgence of existing atrial fibrillation. Will I have another? That is up to the cardiologist and his decision on an ablation procedure.

[PRL1957 in reply to PMRpro]

I am sorry to hear of your 'mild flare' and atrial fibrillation. (I know I have seen you mention the latter, recently.) Does that mean your AF might also have some autoimmune component to it?

As for the declining protection, I am aware that viruses mutate: hence the need for annual 'flu vaccinations to match (what is hoped will be) the prevalent strain, come 'flu season. And, clearly, covid is less seasonal. But doesn't the protection offered by the covid vaccine fall faster than the virus mutates? Isn't Omicron, or a closely related variant still the dominant form? Even the recently identified Arcturus strain is related to Omicron (XBB.1.16).

[PMRpro Ambassador in reply to PRL1957]

The AF was almost certainly caused by the autoimmune component of the PMR damaging the sinus node cells as the symptoms started about the same time and a flare always made the AF worse so it was linked to the inflammation But it was really well controlled on medication until November.

There isn't really a speed of mutation - they are happening all the time and it depends on the characteristics as to whether one becomes dominant - all to do with its success when it comes to multiplying and surviving. If it kills the host, it has failed. And loads of them derive from the same forebear.

[PRL1957 in reply to PMRpro]

Thank-you for your reply. I hope you can get the AF well under control again soon.

[PMRpro Ambassador in reply to PRL1957]

Thats up to the cardiologist on Friday!

[Golden20 in reply to Kendrew]

Hank you for your my sensible comments. It sure is a difficult decision and don’t think that will change, as this disease is going be always here. I had Covid just after Christmas, thankfully, very mild mostly sinus headaches. I’ve just been called for 6th jab and wonder, do I really need it? Probably will, feel we’re lucky to have the choice.

[agingfeminist]

The analysis of the data is clear: covid boosters prevent severe disease...some individuals without vaccinations might get covid and be fine...but that is not really relevant. Might a covid booster make PMR worse?...no clear evaluation has been done but covid at its worse can hospitalise you etc. PMR flares don't. Having said all this, I do worry when I have the boosters that I will have a flare. I find taking a step backwards with the PMR so dispiriting but I do remind myself of where the risks really lie. These are not easy decisions.

[PRL1957 in reply to agingfeminist]

Well, my vaccinations made my PMR worse (i.e. from none at all to considerable pain, tiredness and hardly being able to move ) and brought on the need for corticosteroids (17 months so far and counting). Medical literature reports many other similar cases.

And adverse reactions at their worst could hospitalise you (e.g. myocarditis or blood clots).

So, you could say some people receiving vaccinations will be fine, which is little comfort for those who are not.

[agingfeminist in reply to PRL1957]

I am so sorry you have fallen victim to PMR. The received wisdom from people on this forum is that we are tipped into PMR by that 'last straw'...it can be any vaccination, any viral illness, severe stress...or something else(??).

With regard to vaccinations in general. There is a risk assessment to be done...for the covid vaccine (as with other vaccines) there are very small risks of nasty side effects...much much much less than the risks associated with the disease. According to the current data the risk in the UK of getting any sort of blood clot (not a fatal condition)with the covid vaccine is a 1000 times less than the risk of dying in a car accident in the UK in a year. (This is a very rough calculation). The very rare side effects really shouldn't put anyone off having a vaccination. The benefits of having a high level of vaccination in a population are wide-ranging.

[Exflex]

I can’t see your dose of Pred…. anyway I’d take it if I was offered. I don’t think they call people randomly, you probably meet the strict criteria.

[Deyazlex]

we’ll Jac, I’m due my 7th on Monday. All has been well up to now with just a sore arm on two occasions. I must admit I’m feeling a bit anxious at keeping plunging this substance into my body but hey ho I guess it’s for the best🤞

[WaltzG]

Hi as said in earlier post been advised by consultant (not rheumatologist) who I respect greatly not to have another booster because risks outweigh benefit at this stage. My first gave me PMR second a flare. She said she had seen too much illness from vaccine to recommend it ...

[PRL1957]

My PMR came on after my 2nd vaccination (but was probably beginning after the 1st, in Feb. 2021). So I have steered well clear of any subsequent vaccinations over the past 2 years.

My wife and I recently (Feb 2023) got covid and survived. In fact, I had essentially the equivalent of a mild cold (on 10 mg/day prednisolone at the time). We only know it was covid because of my wife's worse symptoms, including loss of taste and smell.

[jayemmemm]

I have just signed up for my seventh Covid jab. I have had no problems with the first six but I tested positive for twelve days between numbers five and six, with no symptoms apart from a one degree raised temperature for two days. I have concluded that the jabs have been helpful and in view of the advice that their efficacy declines as we become older (I'm 88) I have no hesitation in accepting the offer. Best of luck to you, whatever you decide.

[Missus835]

I have had only the 2 intial Pfizer Covid jabs, which brought on the (caused) PMR. Started May 2021 with first jab, shoulders and neck sore all summer and went through myriad pillows. The excrutiating pain escalated 10 days after the second jab in Aug. 2021. Have not had any kind of vax since and will not. Your body, your choice (except the first 2 jabswere mandatory).

[Viveka]

Indivual choice weighing up your risks through covid vs PMR. I was diagnosed with GCA 5 days after first vaccine and on the third vaccine I flared. (On the second I was on a lot of pred.)

I was always in favour of vaccines but nothing would induce me to have another one for covid (or anything else) because of risk of stimulating the wonky IS. I have had covid and been fine. I don't have any other illnesses that make me vulnerable.

Six in a couple of years seems a heck of a lot of vaccines.

[Jayveedee in reply to Viveka]

I quite agree Viveka and am really glad I decided at the very beginning not to have the vaccine which I didn’t think had been tested sufficiently (usually 10 years)and also stated it wouldn’t stop you getting it or passing it on. I had PMR and was on steroids so considered vulnerable at the time but was able to stop the steroids within a year by increasing my vitamins and supplements and eating healthily. It concerns me that people are having 6 or even 7 vaccines without knowing how it is affecting their bodies but as you say individual choice.

[PMRpro Ambassador in reply to Jayveedee]

It isn't "usually 10 years testing" - it is 10 years to DEVELOP and launch a vaccine. Much of that time is waiting for funding - something that was eliminated entirely for the Covid vaccine because the world threw money at it. The basic research was already there - had been for some years as mRNA vaccine technology has been around since the 1990s but development requires massive commercial interest as it is expensive. Vaccines already existed. The biggest jump was that the genetic code for Covid was determined in days - because that technology was available thanks to the Genome Project - and SHARED, something that was really unusual, usually each group has to work it out for itself.

publichealth.jhu.edu/2021/t....

And "but was able to stop the steroids within a year by increasing my vitamins and supplements and eating healthily" is a claim you can't substantiate - if that was all it required, very few of us would be here.