Booster jab?: Hi I am concerned that my PMR began... - PMRGCAuk

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Booster jab?

JAC1947 profile image
58 Replies

Hi

I am concerned that my PMR began after my last booster/flu jab. My Doc also says she has heard of other cases relating to this. So as I qualify for the next round of jabs I am seriously considering not having it. I would appreciate any comments.

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JAC1947 profile image
JAC1947
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Qula profile image
Qula

likewise JAC1947, I felt unwell 24hours after the Pfizer booster one year ago and it has turned my world upside down learning to live with PMR and steroids. I am also dealing with Afib, essential tremor and underactive thyroid.

My gp said it was up to me if I had another booster and I opted to avoid further jabs as clearly my immune system was upset. I do try to avoid situations where I might catch covid or flu etc.

You will soon find information and links to articles on this very supportive website. It is a tricky decision we each have to make after much thought and research.

Best wishes.

bussell profile image
bussell

PMR started for me the day after my first Covid vaccination (Dec 2020). The GP thought it was a coincidence. I did not. However I have had every booster going since then and none has caused me any trouble at all. Incidentally I have also had Covid twice despite best efforts to avoid risk, but both times very mildly. I wonder if it would have been much worse if I had not been up to date with all boosters. Hope this might help you in your decision making! Good luck.

PMRpro profile image
PMRproAmbassador

PMR can start after other vaccines too, especially the flu or shingles jabs. I had a bit of a flare after the second original Moderna jab but it faded and was mainly fatigue rather than more severe symptoms. Or it can happen after the illness for which the vaccine is being given, And there are a whole load of possible causes of PMR, it is never one single factor, it is a accumulation of a lifetime of insults to the immune system - illness, injury, infectionm chemical, environmental, emotional, mental or physical stress, In general it can be said that if the thing you think caused it hadn't, then the next such stress probably would have.

I developed a/fib problems after the bivalent jab 6 months ago - had had none with the previous jabs and I have had a/fib for years, it was originally caused by the autoimmune part of PMR, My PMR appeared at a stage in my life I'd not yet had flu or shingles jabs, I hadn't recently been ill, there wasn't anything really identifiable to cause it.

The question you have to ask is what would happen if I caught whatever the jab is to protect you against. It might be even worse - and you already have PMR so that won't trigger again.

Broseley profile image
Broseley in reply to PMRpro

Re your last paragraph, could it prolong it though?

Seacat30 profile image
Seacat30 in reply to Broseley

That is what I want to know.

PMRpro profile image
PMRproAmbassador in reply to Broseley

I don't see why it would, might give you a short-lived flare but overall I doubt it would make much difference. But you can't know.

sferios profile image
sferios

My PMR began this January right after my covid booster shot. It is still severe and I need 25 or 30 mg of prednisone to keep my symptoms away. My rheumatologist told me never to get another covid vaccine because my body did not react to it the way it was supposed to.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to sferios

Have replied to your new post - but it may not be totally the fault of the booster.. as well explained by PMRpro [above].

sferios profile image
sferios in reply to DorsetLady

Maybe not. I was definitely under high stress when I got the shot. But my right shoulder (injection site) still hurts way more than my left shoulder. So something is going on there. I think the nurse may have injected the vaccine into my bursa instead of my muscle. Lots of cases reported of this.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to sferios

Stress most certainly is a pre cursor to PMR - many will attest to that…. And not good from the nurse.😞

PMRpro profile image
PMRproAmbassador in reply to sferios

That sounds like poor technique.

piglette profile image
piglette in reply to sferios

The person giving me one of the vaccines, (he was a dentist in fact!) Managed to hit a nerve, the pain was unbelievable for a few seconds, my screams were pretty impressive too. He did apologise. I think it was his first day. Some vaccinators are better than others!

priss58 profile image
priss58 in reply to sferios

Hi. My rheumy told me the same x

Nuff1 profile image
Nuff1

SIRVA (shouler injury related to vaccine administration) is not unknown ncbi.nlm.nih.gov/pmc/articl...

sferios profile image
sferios in reply to Nuff1

I wish it was only my shoulder. When I first experienced symptoms, it was bilateral and it all came on at once. Shoulders, neck, thighs, hamstrings, glutes. But my right shoulder was ten times more painful. Even now, when I taper too low on the prednisone, all the pain comes back everywhere, but my right shoulder is worse. There's no way for me *not* to see this as primarily vaccine-induced. Perhaps stress contributed. Perhaps having had covid seven months earlier contributed. But the vaccine was absolutely the proximate cause, if not the ultimate cause.

Gardendaffodil profile image
Gardendaffodil

Hi there, I had my first flu vaccine 4 years ago and two weeks later I had PMR. Never had the vaccine since. I’ve just finished taking pred a month ago and I’m really hoping it stays away. I was a fit and healthy women before the vaccine but of course doctors say it wasn’t to blame ??????

PMRpro profile image
PMRproAmbassador in reply to Gardendaffodil

Strange since there is plenty in the literature that flu and shingles jabs are associated with the onset of PMR - though of course it isn't the single cause, just the final straw that breaks the camel's back - or in this case the immune system's back!

Gardendaffodil profile image
Gardendaffodil in reply to PMRpro

Anaemia update :-

I’ve recently had a colonoscopy and endoscopy and results are all clear although I do have a hiatus hernia and diverticula. My basal cortisol test came back all clear no action so now doctor is putting me iron tablets for three months then another blood test. I am so relieved and am looking forward to hopefully having more energy. My only struggle now I bet, will be constipation 😤😤

PMRpro profile image
PMRproAmbassador in reply to Gardendaffodil

"My basal cortisol test came back all clear no action"

What a useless comment!!!! You need to know the figure!!!!!

Have you had iron tablets before? Constipation would have been preferable to their effect on me! Agonising gut cramps and the runs - so bad they had to dig out the expensive version which didn't go down well with them. I approved!

Gardendaffodil profile image
Gardendaffodil in reply to PMRpro

Thanks for your reply. I will call on Monday and see if I can get some figures. I haven’t taken iron tablets before but have heard that the side affects aren’t great. 😩

JAC1947 profile image
JAC1947 in reply to Gardendaffodil

Hi

I too have diverticular and hiatus hernia but since being diagnosed with PMR and low dose prednisone I have health breakfast of berries with Kefir, nuts and Chia seeds on top which has really sorted constipation. Good luck.

Gardendaffodil profile image
Gardendaffodil in reply to JAC1947

Thanks JAC I will give that a try 👍

Nessie87 profile image
Nessie87 in reply to JAC1947

which brand of kefir did you take please?

JAC1947 profile image
JAC1947 in reply to Nessie87

Yeo Valley organic Kefir from Tesco, Sainsbury and Waitrose and probably others. Took a bit getting used to and I have a tiny drop of honey on it. I also take a tumeric curcumin tab after my evening meal. Good for anti inflammatory . Good luck

Nessie87 profile image
Nessie87 in reply to JAC1947

Thank you for that! I’m going to buy some today to try.

in reply to Gardendaffodil

note I do not have PMR but a chronic AI condition in the rheumatoid field with symptoms that cross over with lupus and PMR.

When prescribed iron tablets I immediately ask fir fibrogel orange drink that swells like a sponge and fir me prevents the dreaded constipation. Blueberries also help as does gentle exercise.

WaltzG profile image
WaltzG

My PMR/GCA came on 3 days after first vaccine. Usual struggle since .....was told at time that Private Health companies were refusing to cover PMR after vaccine since so many claims !!

PRL1957 profile image
PRL1957

The anecdotal bit - not statistically meaningful and others may have different stories:

I am absolutely certain my PMR was triggered by two (Pfizer-BioNTech, emulsified RNA, Feb and April 2021) vaccinations. My wife and I were being very careful because of the covid pandemic @and looking after an elderly parent - so there was no other possible trigger. Also, as a precaution, we were monitoring our temperatures dialy, and my record points directly at the vaccinations.

For that reason, we have not been boosted. Then we caught covid in Feb. this year. My wife was very ill (high temperature, 'flu-like symptoms, loss of taste and smell) for over a week, and took about 3 weeks to return to normal; I just had the equvalent of a mild cold and was better within a week.

Now, the science bit:

The medical literature contains numerous reports of autoimmune diseases being triggered by the covid vaccinations. But this is still a very small fraction of the large number of people who have been vaccinated. For example:

Ottaviani et al: Polymyalgia rheumatica following COVID-19 vaccination: A case-series of ten patients; Joint Bone Spine 89 (2022) 105334, doi.org/10.1016/j.jbspin.20...

Chen et al. New-onset autoimmune phenomena post-COVID-19 vaccination; Immunology. 2022;165:386–401, doi.org/10.1111/imm.13443

As others have said, there are many causes for PMR; it and other autoimmune diseases were around well before the SARS-Cov-2 virus caused the pandemic. However, viral RNA is known to cause inflammatory reactions by activating 'Toll-like receptors' in various cells of the inate immune system. Consequently, the vaccines use a modified form (N1-methyl-pseudouridine, in place of the uridine bases), which suppresses most of the inflammatory action - but not all. Recent work by Vierbuchen et al:

RNA is taking its Toll: Impact of RNA‐specific Toll‐like receptors on health and disease; Allergy, 2019, 74, 223–235; dx.doi.org/10.1111/all.13680

suggests that guanosine bases will also weakly activate TLR7. I suspect that might provide at least some explanation for the small proportion of adverse autoimmune reactions to the vaccines.

PMRpro profile image
PMRproAmbassador in reply to PRL1957

"so there was no other possible trigger"

There is no single trigger and the evidence is that it is a lifetime of insults that put the immune system under stress until eventually one final straw tips it over the edge and it goes haywire. In your case it was the Covid jab, for others it was the flu jab or the shingles jab, illness, emotional, physical, mental stress, injury, surgery or a host of other things, Autoimmune disease existed long before Covid and will continue after Covid, it happened to be the jab for you. But as you say - one of a small proportion of cases.

PRL1957 profile image
PRL1957 in reply to PMRpro

Sorry: perhaps I should have said 'no other possible trigger at that time'.

I can see how the 'accumulated insults' mechanism could work, particularly if several come about in relatively quick successon (say over the last decade or so). But should I still expect some 'residual biochemical grievance' from the insults I received over half a century ago in the form of childhood illnesses or vaccinations? Perhaps, yes; I know some viruses (e.g. varicella-zoster) can persist, causing problems (shingles) many years after the first infection (chicken pox).

On the other hand, I suspect some kind of 'biochemical forgetfulness' mechanism might occur, by which earlier insults are eventually forgiven - the immune system 'has a word with itself' and calms down again. My experience with the vaccine scared me into continuing precautions (masking, hand-gel, minimal social contact); but my recent episode with covid has not caused a 'flare' (or any other persistent unpleasantness). But, perhaps, the effects of RNA in the virus (along with its other cellular components) or modified parts of it in the vaccines (together with other materials in the formulations) are different.

Also, as with 'verbal' insults, I am sure that some people are more sensitive (or susceptible) than others and some biochemical insults are weightier than others - the equivalent of starting a war over three tennis balls.😊

PMRpro profile image
PMRproAmbassador in reply to PRL1957

I think it does calm down but never heals entirely - almost like a stretched tendon is never 100% as strong and the joint works great for years but is more likely to develop arthritis many years later than the joint that didn;t have the same history.

Exflex profile image
Exflex

personally I would ‘risk’ the booster than getting seriously ill from Covid. Catching the virus is going to cause your immune system grief. The effect of the jab doesn’t last forever so if offered I would get what I can.

Flivoless profile image
Flivoless

I developed PMR shortly after my first, Oxford, jab but subsequent jabs have had no ill effect.

Fetlar73 profile image
Fetlar73

I had PMR the day after my second jab, following some very stressful months. I thought maybe the vaccine was just too much for my immune system to cope with, if that is possible. However I have since had all flu and Covid jabs offered to me and have been fine. Two months ago I finally caught Covid, was in bed for three days, feeling very tired and slept a lot, a tiny cough, but no other symptoms. No temperature, oxygen levels normal. I hope this helps. Best wishes.

AshPen9 profile image
AshPen9

Yes JAC1947, I also started with my autoimmune condition a week after my first Covid booster. However, as PMRpro says, that was probably the final straw. Looking back, the signs were there before. I've had every jab available since and not had any noticeable ill effects. I have had Covid and was only mildy ill, which may not have been the case if I hadn't had the vaccines.

Karendeena profile image
Karendeena

My PMR started a few days after my second covid vaccine and I am still fighting it 2 years later

Stellamavis profile image
Stellamavis

I chose not to have any further booster jabs after GCA was diagnosed the day after my 2nd vax in April 2021..I had undiagnosed mild symptoms of tender scalp and constant headaches between 1st and 2nd vaccines which flared up severely after my 2nd vax…I rang Gp surgery who called me straight to surgery for tests and upped my Pred to 40mgs from my previous dose of 5mgs for PMR as he was sure I had GCA…which I have..it was then I found this site and read everyone’s input on PMR /GCA and so I decided to refuse all offers of Covid boosters and flu jabs as the after effects weren’t worth the suffering that people on here have had. I’ve had health issues since high doses of pred (now on 6mgs) but so far been free of Covid when all other family members have had all the boosters offered and still had Covid some more than once…also I’ve not been put under pressure from Gp or Rhuemy when I’ve refused vaccines.

Sunnyday365 profile image
Sunnyday365

I am confident my PMR came from my flu jab, SIRVA first then PMR. Covid vaccines didnt seem to change anything, immune system already in trouble.

Greenthought profile image
Greenthought

I developed PMR shortly after my second Astra Zeneca jab, and after I had had Covid right at the start of the pandemic (I'm pretty sure - no tests back then, but I lost taste and smell for 5 weeks!). Since then I've had a couple of boosters (Pfizer) with no ill effects. I've also had flu jabs, but leaving 10 days between Covid boosters and flu ones, just in case. I'm not on pred - my PMR started strong, with possible GCA headaches and all-over pain and stiffness in shoulder and hip girdles to the point of being unable to get upstairs without crawling. This was mid-pandemic and I never managed to see a doctor face to face. I've only had a couple of blood tests, with the GP suggesting it might be PMR by phone after a year of misery, but we agreed that she wouldn't put me on pred for the moment since it seemed to be gradually getting better. It has now gradually decreased to the point where I have no head symptoms, hips are better, just shoulder aches, worse at night and on waking. So I've been lucky compared to many on this forum. But having grown up in the 50s and 60s when there were few vaccinations apart from smallpox and BCG (for TB - or was that a test?) and the effects of polio were evident all around us in severely disabled children, I have always been strongly in favour of vaccination in general. It's a difficult decision that each of us has to take, weighing up the pros and cons, but mine was to accept boosters, cross fingers for myself and hopefully reduce the spread of Covid in the general population a bit, too.

PMRpro profile image
PMRproAmbassador in reply to Greenthought

BCG is the TB vaccine. Got that at 13 or so didn't we? I remember visiting the polio clinic for the oral vaccine from primary school. And smallpox of course - but didn't we just get one? My aunts had 4 enormous scars from theirs. Diphtheria was already used in the 50s - it had been around since the 30s in fact.

peopleshistorynhs.org/encyc....

includes whooping cough but I don't remember that - my brother got it (probably from me, I was at school) when he was 6 months old and nearly died, Horrendous 3 months until he got over it, couldn't be left alone, day or night.

Greenthought profile image
Greenthought in reply to PMRpro

Thank you for jogging my memory! Yes, polio vaccine on a sugar cube - and a small star-shape scar from the one smallpox jab. I had whooping cough - though not as badly as your brother, by the sound of it - and mumps at the same time, which was fun. Also measles, on its own, age 6 - my sister, age 1, was very ill with that. Later at 12 I went down with rubella (AKA 'German measles'!) on the first day of the Easter holiday, and was confined to my bedroom in case my spots scared the elderly guests in the boarding house I was staying in, run by an aunt. Oh joy. Still, I'm a proud NHS baby (1948), and still here, somehow!

Pescador profile image
Pescador

I had my first two Moderna jabs with no issues. Because I was traveling to Japan in January I had to have a third shot. I got the Moderna bivalent in December to allow my entry to Japan. Up to that time I considered myself pretty healthy. Hiking 5 times a week and fairly active otherwise. Shortly after my 3 shot I started noticing my muscles unusually stiff. Didn’t think anything about it at the time. As January and February rolled around my muscles got painful to do much of anything. I didn’t help matters at the time because I got really sick from eating bad seafood in the Philippines which probably finished off my immune system. Anyway in March I was diagnosed with PMR. I truely believe all this started with the booster shot although the doctor will not comment on that. So I’m now eating a good diet to help my body heal (probably something I should have started long ago… I’m 70 yrs old).

PMRpro profile image
PMRproAmbassador in reply to Pescador

I think the bivalent booster has caused some problems!!! Of various sorts ...

musclesinflamed profile image
musclesinflamed

The way I understand it is by explaining the difference between "a cause" and "a trigger". There has been a lot of ink used to discuss this. While some believe that vaccines (of various sorts) have "caused" PMR, but in fact, it seems that that the problem was likely festering but that an incident may have "triggered" it to show up when it did. One explained it as driving with worn out tires. You're going to have a problem and that problem might show up when you hit a pothole in the road. Hence, the problem was there but the trigger that caused the flat was hitting the pothole. If this is true, you likely had PMR but the symptoms hadn't manifested until it was triggered by a vaccine. I believe that was the case for me.

Pescador profile image
Pescador in reply to musclesinflamed

you could be right. Had I known any of this I would have drove around that pot hole and not got the jab. 🙂

musclesinflamed profile image
musclesinflamed in reply to Pescador

Yes, but your tires are still worn! I should have said that the pot hole was a trigger but not the cause.

PRL1957 profile image
PRL1957 in reply to musclesinflamed

I like that analogy. What I want now is the equivalent of 'Quckfit' (other tyre companies are available) to get a complete new set - i.e. to get over my PMR!

Missus835 profile image
Missus835

PMR started right after my first Pfizer jab in May 2021. Dealt with pain in neck and shoulders all summer, as well as carpal tunnel-like symptoms in right hand. Thought it was my pillows and bought many new ones which did not help. Had to wear a brace to help me use the mouse for work. Then in Aug. 2021 had the second jab. 10 days later all the pain started and I could not get up out of bed. Finally got into the tub (because I thought a hot bath would help) and couldn't get out. My daughter had to help me out. Pain escalated until Dec. 2021 and my pharmacist asked why I didn't have bloodwork to rule out RA. Had said bloodwork. CRP very high. Called the GP that had diagnosed me with old age and he immediately referred me to a Neurologist here in Halifax. In Jan. 2022 put on 20 mg. of Pred which alleviated the symptoms almost overnight. Still tapering after a GCA scare in January and so I'm at 40 mg. Pred at this time. Reducing slowly. Sadly we are forced to take these jabs and now look what we are dealing with. Sorry this has happened to you.

Frigidair profile image
Frigidair

Many if not most of us are aware that vaccinations can play an important part in our overall health. As a result many of us have been vaccinated against an assortment of undesirables. It then becomes natural that with a subsequent autoimmune diagnosis to suspect the vaccine. Given the overall benefits of vaccinations, weighed against the relatively few patients diagnosed with PMR, medical professionals may hesitant to equate the two. Currently, as far as I am aware, there is no published evidence of a statistical relationship. Does this mean there is no relationship? Perhaps not. But everyone should consult with their doctor(s) before refusing to roll up their sleeves. Ask the question “Am I healthy enough to receive a vaccine?

PRL1957 profile image
PRL1957 in reply to Frigidair

Ask the question “Am I healthy enough to receive a vaccine?

I don't think a doctor can answer that question - even if they have the time to see you. (Perhaps, try a cartomancer?)

I was pretty healthy before receiving my (2) covid vaccinations (spring 2021), which triggered my PMR - and we will be celebrating two years together at the end of this month.

On the other hand, my recent (and only) episode of covid felt like a mild cold. Did I still have some benefit from vaccination after 2 years? I don't know, but my wife (vaccinated twice, at the same time as me) was much worse.

Jane424 profile image
Jane424

Mine began just after a flu jab and when I had my first covid shot I flared for 3 months. I have had no more shots. I now try to avoid anything that might upset my immune system. I also have myeloma and MS. Yes, like you I am very careful who I see and where I go. Oddly I don't get sick. Last flu in 2004 and last cold in 2011. Hope you feel better soon.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Polymyalgia Rheumatica- what this forum is all about

QUE6T-33 profile image
QUE6T-33 in reply to DorsetLady

Thanks for that DorsetLady

gingerraspiller profile image
gingerraspiller

I was a healthy, active 64 year old prior to Covid vaccines. I had alot of aches and pains in muscles and joints after my 1st 3 Pfizer vaccines, but gradually it got better. After my 4th vaccine in May 2022 – Moderna (I later learned that Moderna has 3 times the amount of mRNA material in the vaccine than the Pfizer) – within a week I started to have severe joint pain and stiffness and it didn't go away, it got worse. My GP diagnosed PMR in August and I have tapered down to 4 mg. After finding this forum and hearing others' stories there is no doubt in my mind that the mRNA vaccine triggered my PMR. I reported it to The Vaccine Adverse Event Reporting System (VAERS) which is a national early warning system to detect possible safety problems in vaccines used in the United States. Here is the website:

vaers.hhs.gov/reportevent.html

My doctor and I agreed - no more Covid vaccines for me. I told him I will consider a flu vaccine next year but I am leaning towards "no" for flu vaccines as well. I have already my Shingles vaccines so don't have to think about them.

Good luck with everything.

JAC1947 profile image
JAC1947 in reply to gingerraspiller

That is interesting as I had 4 Pfizer jabs and the last one was Moderna! After which I was diagnosed with PMR. Thank you for the info.

Legsy0714 profile image
Legsy0714

my polymyalgia I am 99% certain was caused by statins and a GP who was only interested in writing prescriptions

Clique profile image
Clique

You can put it in but you can't take it out. I am avoiding anything injectable from now on-apart from at the dentist!!

Beauolive profile image
Beauolive

Seems to be a common issue.

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