PMR and Covid-19 vaccine: Three days after having... - PMRGCAuk

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PMR and Covid-19 vaccine

Laurenceseidler profile image
52 Replies

Three days after having my first Astra-Zeneca jab I developed extreme muscle aches in my thighs. These aches rapidly became acute and have spread to my upper arms. Subsequent blood tests showed elevated inflammation markers and a preliminary diagnosis of PMR followed. When I suggested to my GP in Spain where I live that I felt the vaccine could have triggered the PMR, particularly as I have a very strong immune system, I was told that this was not possible. Hmm... I have spent the last month researching correlations between vaccination and PMR and lo and behold, there are increasing numbers of PMR sufferers being databased with possible association with the vaccination. This has led to a class action being proposed in the USA as many cases where patients develop polymyalgia rheumatica after getting a vaccine have been reported to the Vaccine Adverse Event Reporting System (VAERS). VAERS is a database that contains all reports of negative side-effects following the administration of US-approved vaccines. The database is managed by the FDA and CDC, and it is used to detect rare side effects to vaccines that were not caught during clinical trials. I feel that anyone who developed PMR symptoms after getting vaccinated should press to have their case flagged up on their national reporting system - Yellow Card in the UK, VAERS in the USA... - as only with the accumulation of isolated cases can the medical community begin to see a pattern and then perhaps a direct cause and effect. I feel very bitter that, having been blessed with a lifetime of zero medical issues, I may have developed this nightmare condition from a vaccine I never particularly wanted. Anyone else out there with a similar story?

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Laurenceseidler
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52 Replies
Predderman2020 profile image
Predderman2020

yes - worsening of PMR symptoms for 2.5 months after the first jab; same, but much more severe after 2nd. Fading now and still on Pred (12-15 mgs) - this has affected with my gradual steroid reduction program. But I don't have Covid! T

PMRpro profile image
PMRproAmbassador

There are quite a few of us who feel the PMR started or flared after the jab. However - if you are saying that about the Covid vaccine, then you have to say it about the flu jab and the shingles jab. It was to be expected really - just as Long Covid was to be expected.

There is no single cause of PMR and GCA. It is considered to be an accumulation of the effects of various stresses on the immune system until eventually a single factor tips it over the edge and the immune system goes haywire. That final straw that breaks the camel's back could be a vaccine, but it could equally be the illness the vaccine is to protect against or an emotionally or physically stressful event, an illness, injury, infection, an environmentl or chemical factor. If it hadn't been the vaccine - it could have been one of them in the near future. And Long Covid has many features in common with PMR.

Despite my flare of PMR fatigue in particular after the jab - I shall still accept a third of offered one. A Predderman says - No Covid. That's far more of a risk than a flare/initiation of PMR in someone who has the genetic predilection and accumulated risk factors for PMR anyway.

Laurenceseidler profile image
Laurenceseidler in reply to PMRpro

You are probably right but medical science can only move forward with data and I guess I am just saying people with jab-PMR correlation should press to have this inputted into the data.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Laurenceseidler

I am just saying people with jab-PMR correlation should press to have this inputted into the data.

We do advise that quite regularly…but it’s up to the individual to actually do it…

you can lead a horse to water etc…..

But always good to be reminded.

piglette profile image
piglette

I am sure that the vaccine can trigger PMR, and probably a lot of other things too. There are about twenty nine pages of potential reactions to both the Astra Zeneca vaccine and the Pfizer vaccine at the moment. In my case I reckon the PMR was triggered by stress, but others think it has been triggered by the ‘flu vaccine and other things too. In UK we have the Zoe study fir Covid where several million people report daily and the people running it have been coming up with some interesting findings.

Seacat30 profile image
Seacat30

Strange neck pain 5 days after AstraZeneca jab 1. My hips packed in a week later. I suddenly couldn't touch my toes. Then pain in my shoulders. Soon finding it hard to turn over in bed or stand up. Pain in lower back when lying down. No comfortable position for legs when trying to sleep. Walking became a curse. I do think the vaccine set me off. I have yellow carded it. In the UK so unlikely to be taken seriously.

Laurenceseidler profile image
Laurenceseidler in reply to Seacat30

Your story mimics mine in every detail. How are you now? Have you been blood tested for inflamation?

Seacat30 profile image
Seacat30 in reply to Laurenceseidler

My CRP and ESR were both raised. I requested a re-test 2 weeks later in case the results were due to having AZ jab 2. Sure enough they came down but not enough. I haven't been offered another blood test for that since starting steroids. I am slowly tapering off prednisolone. Started at 15mg, then 12.5mg. Down to 10mg today so we will see how well I do? The steroid made me capable to coping with stairs, standing up and walking carefully for up to an hour a day after a bit of practise. It didn't remove all of my problems but I don't think that everything was necessarily PMR. I may have done myself injuries while trying to cope with my plight. That makes it rather difficult for me to judge how well the steroid dose is helping me. My rheumatogist ordered various other tests but isn't being very communicative about the results. Xrays - never seen report. She told me on the phone they didn't show much of interest. Blood test for the gene for ankylosing spondylitus. Ultrasound on my right shoulder. I am going to chase all this up again next week.

HeronNS profile image
HeronNS in reply to Seacat30

Just don't push that pred reduction. I think it likely if PMR was indeed triggered by the vaccine you are more likely to have a shorter experience of it than many do, and you don't want to jeopardise that happy possibility! Good luck!

Seacat30 profile image
Seacat30 in reply to HeronNS

Day 2 of reduction to 10mg. Not sure this is going well. Hips might be hurting more? Can't do anything about it but keep going until Monday. GP shut and cannot get any more 2.5mg tablets. I will see what happens tomorrow.

HeronNS profile image
HeronNS in reply to Seacat30

If you are able to cut your tablets (not enteric-coated) you can safely cut a 5 mg tablet. Failing that, pharmacy may be able to supply you with an emergency supply? You will definitely need 1 mg tablets once you are comfortable at 10.

Seacat30 profile image
Seacat30 in reply to HeronNS

I am not good at cutting them based on my experience of doing it for my cat. I will review matters in the morning. Thanks for your concern.

PMRpro profile image
PMRproAmbassador in reply to Seacat30

The pharmacy should have a pill cutter -

Seacat30 profile image
Seacat30 in reply to PMRpro

Good idea.

Predsharer profile image
Predsharer

I have no doubt that the AZ vaccination triggered my PMR (although I accept it may have been lurking somewhere). It is very important that we report our PMR on the yellow card scheme. If we believe it to be as a result of the vaccine.

To have this now, at a time when we need the strongest immune systems possible, is real blow and all because we had a jab to stop us getting sick!

60srockguy profile image
60srockguy

yes again...vaccine shot has definitely triggered something. I googled my symptoms and also realised that they were the same as my suffering Mothers PMR. Not keen to use steroids as part of diagnosis pathway though. Not seen doc yet as trying to reduce inflammation using anti inflammatory diet and cox 2 anti inflammatory drugs as I have those for degenerative disk. Hoping at this time that it will go away and dreading the inevitable

PMRpro profile image
PMRproAmbassador in reply to 60srockguy

"Not keen to use steroids as part of diagnosis pathway though"

Why not? it is a case of taking a moderate dose for up to 2 weeks - and you can then just stop. The response to pred, its speed and degree, is a significant bit of evidence. And long term - I'd dispute that pred is any worse than the Cox-2 antiinflammatories.

60srockguy profile image
60srockguy in reply to PMRpro

Indeed that may well be the case....I will only use cox 2 for 3-4 days in any case as it has impact in its self. Interested to hear form any that have not immediately started on steroids first. Symptoms have improved a bit in that I can walk like a wobbly guy with back problems rather then a penguin. Shoulders not back to normal yet although I can drive without hand shuffling at the bottom of steering wheel.

PMRpro profile image
PMRproAmbassador in reply to 60srockguy

I had 5 years of PMR without pred - not choice, not diagnosed. NOTHING would induce me to go back to that, I lost the middle 5 years of my 50s

healthunlocked.com/pmrgcauk...

Laurenceseidler profile image
Laurenceseidler in reply to 60srockguy

I have not started any form of medication as yet though am ingesting lots of anti-inflammatory foods : raw garlic, ginger, rosemary, raw onion. My symptoms are definitely improving but the real test will be next week when I get the results of a second blood test.

60srockguy profile image
60srockguy in reply to Laurenceseidler

Post op after discectomy i was unable to walk of function enough to go back to work for a year or so followed by another couple of years having to pain med. Having lots of blood test s during that time showed increase of inflammation markers but no diagnosis other then failed back op. Desperate to return to normal I tried everything and learned keeping a constant diary of what I did excursion wise to pain flair ups to understand what was happening. What I did not relate to flair ups. After understanding my wife sarcoidosis and looking at why I had excessive inflammation I researched and realised that cox 2 drugs worked well and that by change of diet I could replicate their effect on my bodies reaction to inflammation process. I made the connection. Interested to hear how your 5 year was symptom wise. I am reluctant to go the pred route until necessary as seen how the wife responds as well as my mum. It is a fact that pred lower immune response so less inflammation- however the action of de inflammation post inflammation is what can be altered by drugs or bodies reaction. It may well be inevitable but not yet. A number of my family have PMR

60srockguy profile image
60srockguy in reply to Laurenceseidler

Dont forget the kale , spinach, pinapple, mushrooms, lemons, soy and almond milk. Avoid dairy milk and eat basic veg , meat, fruit and nuts not any processed food

Laurenceseidler profile image
Laurenceseidler in reply to 60srockguy

A wobbly guy beats a penguin. I admire your humour in the face of adversity!

HeronNS profile image
HeronNS in reply to 60srockguy

It's hard to compare our experiences with yours. If the PMR was indeed triggered by the vaccine, I wonder if you will recover more quickly as side effects of vaccines do wear off. Good luck! I have no correlation with PMR onset with any vaccine as I was not even getting regular flu shots at the time and my 10-yr booster was due around two years into the PMR/pred journey, so not a factor either.

PMR_sufferer1 profile image
PMR_sufferer1 in reply to PMRpro

Wow steady. Pred has to be taken with respect and if you take it and just stop it can stop your adrenal gland working. BAD IDEA you mudt wean off it slowly.

PMRpro profile image
PMRproAmbassador in reply to PMR_sufferer1

NOT if you have only been taking it for 2 weeks - which I specified,

Laurenceseidler profile image
Laurenceseidler in reply to 60srockguy

I think you should get a blood test which flags up the two main inflammatory markers and then talk to your doctor. If you have PMR then you can decide on whether to medicate or not.

60srockguy profile image
60srockguy in reply to Laurenceseidler

I will give it some time as by the time I go through the process off seeing doctor, getting bloods done and getting results ect I would have lost 3 weeks. I have seen in the past the effects in bloods and would expect drop in markers over that time from what I am doing. If that does not work then reluctantly I will go

AyJayBass profile image
AyJayBass

PMR definitely flared up for me on the third day following my first OAZ shot in late January. It was not diagnosed until mid March so I had a torrid few weeks. I have submitted a Yellow Card report. Maybe I had a low level of PMR already and the vaccination made it flare. I had a flu vax last September without any problem.I belong to a PMR group on Facebook (nowhere near as good as this one!) and one of the Admins posted several weeks ago a request for people to report PMR onset, or major flare, after vaccination . There have been a couple of hundred positive responses mentioning all the common vaccines, not just OAZ. She is following up with a short survey by personal message to each positive responder.

Shanghi profile image
Shanghi

I have never taken any flu shots, nor thank God needed any vaccines since the childhood ones. Plus I have been in excellent health all my life until I rec’d the Astra Zeneca vaccine (here in Canada, they used Covishield, the Indian version of AZ), When I went for the vaccine, I was under the impression that it was Pfizer that was being administered, as there was no mention yet of using Astra Zeneca,. It was not available yet, however after the jab, when I questioned the certificate, I was told that it was AZ., but bottom line, according to law, they are supposed to tell you what they are injecting! They didn’t!!!

20 days later, the symptoms started,& was eventually diagnosed with GCA end of April.

The doctors of course are

reluctant to acknowledge any link.

I just saw my rheumatologist, 2nd time. My CRP in April was 46, & now it is -4!

The rheumy said if the GCA was caused by the AZ, it might be in my favour, as the GCA may disappear much faster, as the vaccine leaves the body, hence maybe the inflammation marker being back to normal.

I’m on 20 mg prednisone & planning finally to get to Spain in Sept. to see my grandkids (God willing).

Laurenceseidler profile image
Laurenceseidler in reply to Shanghi

Your reply is the most interesting I have read. Whereas I was diagnosed with PMR, I have noticed of late that my symptoms are more in alignment with GCA. Besides paralyzing muscular aches and some loss of mobility, I had a short bout of blurred vision ( about 15 seconds), a headache lasting three days and slight tenderness on my left temple. These specific symptoms have not returned and I am noticing a general and constant improvement in my aches and mobility issues to the point that I am now 95% back to normal. The only event which I can in any way corelate to the onset of symptoms and my CRP of 19.2 ( tested one month after the vaccine), is my AZ jab. It would appear that as the vaccine fades in my body, so too are the symptoms even though I am not taking any form of medication,. I am going to see a rheumatologist next week. Can you tell me more about your symptoms and how they have evolved?

Seacat30 profile image
Seacat30 in reply to Laurenceseidler

Have you had both doses of the vaccine? I got to 11 weeks after jab 1 without improving. In fact I got worse about week 10. I am now on week 9 after jab 2 but on steroids so cannot tell whether the vaccine effect is wearing off me.

Laurenceseidler profile image
Laurenceseidler in reply to Seacat30

No, just the first jab and have no intention of having a second until I have gather more data. In my PARTICULAR case, based on where I live, social patterns etc, the chance of me dying or getting chronically ill from Covid 19 is statistically 1:63.000. This is trivial. What interests me about your case is not the fact of the casuistic link between vaccine and getting the symptoms as there are literally tens of thousands of such correlations now coming to light. No, its the fact that you started to get better. I have been diagnosed with PMR following vaccination but my improvements without medication are baffling my medical mini team as PMR just doesn't get better that quickly and without meds. Your reply causes me to thing I have been misdiagnosed and actually have GCA and that I am getting slowly better as the effects of the vaccine slowly wear off. What tests were done on you to confirm CGA rather than PMR? I am new to all this and want to be tested asap. Thanks for helping and I hope you are doing OK.

Seacat30 profile image
Seacat30 in reply to Laurenceseidler

I think you are replying to Shangi not me but remember that she has posted about this before because I was chatting to her then. Have you read her previous posts?

PMRpro profile image
PMRproAmbassador in reply to Laurenceseidler

It is thought by some that there is also a reactive form of PMR, just like there is of inflammatory arthritis. That would improve relatively quickly - but there are many who have a diagnosis of PMR but immediately respond to pred at a relatively low dose and are able to reduce to as low as 1mg or even less very quickly.

Laurenceseidler profile image
Laurenceseidler in reply to PMRpro

Interesting as my diagnosed PMR is DEFINITELY improving without meds and IO don't believe in miracles. When you say "It is thought by some that there is also a reactive form of PMR" who are the "some"? I have had both the vaccine and PMR symptoms for three and a half months and improvements began about 10 days ago which pretty much coincides with my T cell and anti-body count falling to around 70%. I am not the only person who has flagged up similar correlations and rapid improvements. I want to help this as there are around 200.000 people in the states alone who have developed PMR symptoms post vaccination and if there is a reactive version of PMR this needs to be headline news for them! Any help with reliable sources much appreciated.

PMRpro profile image
PMRproAmbassador in reply to Laurenceseidler

There are many causes of the symptoms we call PMR - they aren't the illness, they are due to some underlying condition that can range from the body's reaction to a vaccine (others too, not just the Covid vaccine), something environmental or chemical through to an illness. What they have in common is they stress the immune system and it MAY flip out and have a paddy. But for most cases there is this underlying condtion anyway - and if you are able to sort out or even cure that underlying condition, the PMR symptoms go away.

60srockguy profile image
60srockguy in reply to Seacat30

I believe that is is the immune system returning to a more rested state under the threshold of over sensitivity / resting normal level rather rather then the vax wearing off. I also believe that that resting state is negotiable depending on environmental triggers (from food types to chemicals /pollution exposure and general body states

Shanghi profile image
Shanghi in reply to Laurenceseidler

I will try to reply as I kept a diary since the onset of GCA . I did start answering, but msg disappeared. So when I have a bit more time I will do so. Interesting that you are in Sierra Nevada region, my daughter (naturopath) is above Lanjaron & Orgiva.I consulted a naturopath here in Montreal to try to counteract as much as possible the side effects of prednisone.

So on a lot of supplement. Plus I switched back to my vegan diet ( mostly raw) dairy free, gluten-free, low carb, no caffeine, no salt, no sugar (just swerve, xylitol, monkfruit, stevia) & restricted fruit. However, to get Omega 6, daily diet of wild fish (salmon,sardines, mackerel).

Whether this reduced the CRP marker of the inflammation is questionable, or just vaccine leaving my system.

Laurenceseidler profile image
Laurenceseidler in reply to Shanghi

Thanks for that. If you come over to see your daughter please feel free to visit us. We are above Niguelas at a finca called Juan Valiente ( everyone here knows where it is) about 20 mins from Lanjaron.

Shanghi profile image
Shanghi in reply to Laurenceseidler

Thx might just do that. Will be in Nerja Sept & Oct, & of course lots of visiting back & forth to their campo above Lanjaron.

60srockguy profile image
60srockguy in reply to Shanghi

I can see that you guys are taking a diet approach (as I am) ...as well as medic route...I have discovered a lot about omega 6 and omega 3 ratios in diet that I think you all would fine interesting and effective in tuning your approach pubmed.ncbi.nlm.nih.gov/124...

Shanghi profile image
Shanghi in reply to 60srockguy

Thx very informative 🙂

60srockguy profile image
60srockguy in reply to Shanghi

worth looking at the why am I susceptible. ...Leaky gut syndrome. gutmicrobiotawatch.org/natu...

Laurenceseidler profile image
Laurenceseidler in reply to 60srockguy

OK

60srockguy profile image
60srockguy in reply to 60srockguy

bing.com/videos/search?q=ea...

60srockguy profile image
60srockguy in reply to 60srockguy

maryvancenc.com/reversing-a...

Bcol profile image
Bcol

Morning . Sorry to hear that you are one of a minority that would appear to have developed PMR from the OAZ vaccine. However, I suspect that catching Covid would/could have been far worse than PMR. I had PMR well before the Covid vaccinations (OAZ) and indeed the flu jab and none of them have caused me any side effects at all. Out of all my family, close friends and wider circle (leaving out those on this forum) I know of no one who has contracted PMR from OAZ or Pfizer vaccines. However, those who are unlucky enough to have a severe reaction should use the Yellow Card or similar system to report it so that the data can be used to tweak future releases. At the moment it is too soon to draw any conclusions but once there has been enough time for all the relevant data to be collated and analysed we will have a far better idea on the overall situation.

Laurenceseidler profile image
Laurenceseidler in reply to Bcol

Quite right: we MUST all flag up and insist that our cases are databased. Otherwise the science cannot move forward. Not too sure though about the "better than contracting Covid" argument which is a much repeated mantra. I love statistics as on one level, all life is risk analysis ( anyone who has fallen in love will know that!) Where I live, on a farm outside a small village in the Sierra Nevada mountains of Spain, and taking into account my age and lifestyle plus medical history, my statistical chance of dying or being severely damaged by Covid-19 if not vaccinated is approximately 1 in 62.000 . This is trivial and way less than the probability of dying I take every time I go climbing. With time we may know what the chance of going partially blind via GCA precipitated by Covid-19 vaccination might be. Only then can an informed decision be made to vaccinate or not. Personally, nothing will convince me to take a second vaccine until a lot more data is available.

HeronNS profile image
HeronNS

I'm sorry you've had this reaction. It is to be hoped that any PMR you are experiencing, if indeed a reaction to the vaccination, will not be a long-lived journey as it is for some of us but will wear off much more quickly. Fingers crossed for you!

Laurenceseidler profile image
Laurenceseidler

Thanks!

PMR_sufferer1 profile image
PMR_sufferer1

The statement you have a great immune.system interests me as i have PMR and would make same statement. Your story soundsnso similar to mine.

Onr extrs issuento.mention is that before my tteatment started i caught covid and for the for 3 days my PMR symptoms vanished. Strange !

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