I have PMR which came on after my Pneumococcal vaccine : has anyone experienced this . my rheumatologist said it could be the cause or it was just coincidental.
I also had the flu vaccine 2 months prior to that and I had a bad local reaction followed by aches and fatigue and then costochondritis for 3 weeks. now I have been offered the flu vaccine next month but I am rather frightened of having another bad reaction (then later in I will be offered the covid vaccine ) and now I am on 10 mg of Prednisolone so is there more chance of a bad reaction to the vaccine.
My question to anyone kind enough to answer is have they had a vaccine whilst on 10 mg Prednisolone for PMR and experienced any adverse effects or was all well.
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Helag
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If you look at related posts, there are some who think a vaccine (of any sort) caused their PMR…not necessarily, but probably was the last thing that finally triggered an already under pressure immune system.
Also loads of information under about Covid incl vaccines in FAQs - see here -
I am of the opinion that the first Covid jab I had (AZ) caused PMR. I can't be certain of course but PMR symptoms struck within 3 weeks of the jab. I have since had 3 more jabs (I've had the complete cocktail now), whilst taking above 10mg Pred, with no side effects at all.
Thanks for giving me your time and advise in answering my questions. I was only diagnosed in April so this is all new to me and I used to be quite active and was a Physiotherapist ( so to our profession the right activity and exercise will help any illness) . But after not being able to move shoulders or hips for approximately 6 weeks and having quite a lot of pain at the worst point until Prednisolone eased everything, then Exercise was impossible! Thanks for your advise on vaccines and it is good to communicate with someone who has had PMR as I know nobody who has this rather debilitating autoimmune disease.
The vast majority of members here have had PMR - and there are hundreds of active contributors at any one time. You can communicate with any of us any time - doesn't matter which bit of PMR is bothering you, have a shout or a whinge any time of the day or noght and it is likely that someone will hear you and reply - and will know where you are are because they've been there too.
I am convinced that my body reacted to the Pfizer Covid injection by developing PMR. I had the first jab at the end of January 2021 and the second one end of March 2021. I became steadily more disabled until I couldn’t turn over in bed or get out of a chair. That was very frightening. I was diagnosed with PMR in June 2021. Like most of the people on this forum, I had never heard of the condition until I developed it. If you can learn to adapt to a less strenuous way of living it becomes manageable. I hope mine wears itself out after 2 years, but I am not holding my breath!
Thanks for your reply. Your symptoms sound exactly as mine were. I hope you are improving and can at least move freely again and have managed to reduce your prednisolone. I am able to use my arms normally now but my hips seem to be still effected and fatigue appears if I do a little too much but at least I am down to 10 mg prednisolone now.My rheumatologist said my PMR may be due to the vaccine but there is no way of proving this.
It may well have been the vaccine - but only because it was something affecting the immune system which was about to throw a wobbly anyway. PMR results from an accumulation of insults to the immune system over years and eventually something tips it over the edge. In your case it was the Covid vaccine but it could have been any vaccine - flu, shingles or one you needed for a holiday. Or the illnesses that the vaccine was to protect you from. Or an accident, surgery or other illness. Or a medication you started or an environmental event. Or stress at work or in the family ...
The vast majority of us with PMR here had it LONG before the Covid jab.
Yes, that is a fair comment. But if it hadn't been the Covid jab it would have been the next factor affecting your immune system that did it. Which could have been the more severe Covid you got as a result of not having had the jab - or any one of the myriad things that like to kick the immune system.
No, PMRpro is correct there are many things that can "kick the immune system" - in your case it may well have been that the vaccine was the FINAL straw.
In my case it was stress from worrying about/caring for sick husband, certainly not any vaccine...
That's precisely what we are saying, it can be a manner of all things......for you (and others) it may have been a vaccine that triggered it, for others it wasn't.
Who? You or me? I'm not clutching at straws - it is science based.
They DO know that the immune system becomes deranged as a result of repeated insults - exactly how or why is another matter. But not the same thing at all.
Sorry for this but I don't really want to get into a slanging match but you contradict yourself in the one sentence, Who or what do you mean by "the immune system becomes deranged as a result of repeated insults"? Don't really understand thatSorry if you think I am being silly about this.
I dunno. PMRpro seems very clear to me. Did you read this reply of hers posted elsewhere in this thread:
Anything that can insult the immune system can contribute to developing an autoimmune disorder and it is thought it is an accumulation over a lifetime that does it, Eventually there is a single straw that breaks the camel's back and the immune system goes haywire and turns on the body, unable to recognise it as self.
It can be illness, injury, stress of all sorts including mental and physical, environmental, chemical, whatever. And that can include medications and vaccines, Many say it was the flu vaccine - many hadn't ever had a flu vaccine, Others say the shingles vaccine, the Covid vaccine - or the disease the vaccine was to prevent.
I'd not had a flu jab before developing PMR - nor shingles, nor the pneumoccocal one. I've had flu jabs regularly since with no effect. I've had 4 Covid jabs - one relatively short-lived flare of fatigue and mild symptoms.
My view is that if the jab would have an effect - I hate to think what the related illness might do!
I hope that nothing is accepted as gospel by the medical establishment when it comes to a new disease which is evolving even faster than our understanding of it! I think it's good to discuss things and work out our own answers. Cheers.
Others with more knowledge will be along, but if it's any help, I had a covid booster back in Jan whilst on 30mg pred. I was on a short term high dose whilst trying to bring a severe case of urticaria under control. I then fast tapered back down to the 6mg I'd been on before. No adverse effects at all.
We're all individuals with different health circumstances. People who don't have health issues can all potentially react differently to each of their vaccinations or each different type of vaccination. We however also have other factors in the mix which probably means it's very difficult to predict how we'll react.
I've had 3 primary vaccinations and 2 boosters. I've been fine after every one except for the last one, which was the Moderna vaccine and I felt quite unwell for 24hrs afterwards. Quite a few of my friends have had Moderna though and been absolutely fine so it's not easy to predict unfortunately.
I also have had flu vaccinations whilst on pred and experienced nothing more than a sore achey arm for 24hrs.
Thanks for giving me your time and advise in answering my questions. I was only diagnosed in April so this is all new to me and I used to be quite active and was a Physiotherapist ( so to our profession the right activity and exercise will help any illness) . But after not being able to move shoulders or hips for approximately 6 weeks and having quite a lot of pain at the worst point until Prednisolone eased everything, then Exercise was impossible! Thanks for your advise on vaccines and it is good to communicate with someone who has had PMR as I know nobody who has this rather debilitating autoimmune disease.
Anything that can insult the immune system can contribute to developing an autoimmune disorder and it is thought it is an accumulation over a lifetime that does it, Eventually there is a single straw that breaks the camel's back and the immune system goes haywire and turns on the body, unable to recognise it as self.
It can be illness, injury, stress of all sorts including mental and physical, environmental, chemical, whatever. And that can include medications and vaccines, Many say it was the flu vaccine - many hadn't ever had a flu vaccine, Others say the shingles vaccine, the Covid vaccine - or the disease the vaccine was to prevent.
I'd not had a flu jab before developing PMR - nor shingles, nor the pneumoccocal one. I've had flu jabs regularly since with no effect. I've had 4 Covid jabs - one relatively short-lived flare of fatigue and mild symptoms.
My view is that if the jab would have an effect - I hate to think what the related illness might do!
PMR Pro-In my post answering yours I forgot to say that no, I do not take any other medication and avoid antibiotics like the plague. In my view these things are the stuff of last resort, and not a first line of defence. I see that the thought police have removed my original responses to you and Helag. I arrived at my position as a direct result of NHS treatment for PMR and prediabetes, which sought to push multiple pharmaceutical drugs on me as if they were Smarties and as such my views are relevant to the PMR/vaccine debate. If I had gone down the NHS route I would currently be on at least 8 daily oral and injected medications. That is not an option which sits well with me. The route I have taken in my recovery was not an easy one, but one in which I have been pro-active ........... I am sitting here without any symptoms of PMR or anything else and a wide choice of what to do with my life and it seems that others here are taking multiple meds and are far and away less comfortable. I rest my case; and wonder how long this post will be here for folk to read.
Thanks for giving me your time and advise in answering my questions. I was only diagnosed in April so this is all new to me and I used to be quite active and was a Physiotherapist ( so to our profession the right activity and exercise will help any illness) . But after not being able to move shoulders or hips for approximately 6 weeks and having quite a lot of pain at the worst point until Prednisolone eased everything, then Exercise was impossible! Thanks for your advise on vaccines and it is good to communicate with someone who has had PMR as I know nobody who has this rather debilitating autoimmune disease. Having worked for the NHS I know they try to give the minimal medication possible and I think the do a very good job under difficult circumstances.
Hi sennetta,I didn't get to read the post that you suggested had been removed, so forgive me if I'm completely on the wrong track here!
I got the impression that you maybe resisted taking certain medications offered to counteract various 'accompanying' conditions that emerged as a result of either PMR or pred?
If I'm correct, just wanted to share that I too, like quite a few people here, have also refused certain medications that were suggested either as a 'precautionary measure' or as a 'trial' to bring about 'relief' of some kind.
I would now have been taking amitriptyline, gabapentin and omeprazole on top of my pred, biphosphonate, statin and beta blocker!
I'm an ex nurse, and feel with the knowledge I have, that I'm well able to argue 'my case' respectfully but informatively. I know not everyone feels as able or confident to do this though.
I absolutely will not take anything without evidence that suggests I do indeed require it and so far, the medication I've refused has not been necessary.
As far as vaccinations are concerned, I do feel increasingly more hesitant about their effect on my immune system.
With 7 (including flu and pneumococcal) vaccinations withinin the past 18mths...and another autumn covid booster plus this year's flu jab still to come, I wonder how much this is 'confusing' my immune system as opposed to 'supporting' it.
On the one hand my pred is trying to suppress my immune system but then along comes a vaccination to try and boost it!
I need to do more research around the potential effects of receiving multiple vaccinations, but despite my reservations, I am still thankful for the safety net the covid vaccine has provided.
There's still much we probably need to know and all our decisions will obviously be decided upon based on our own individual circumstances and health requirements. What's right for one isn't necessarily right for another.
Haha!... if this has absolutely nothing whatsoever to do with your post then maybe it's proved interesting or helpful to someone else. 😄
An interesting reply with good sound reasoning; thanks. I too only take medication if I really think it necessary but taking prednisolone means other medications seem needed to protect you from its effects. So I do take 10mg Omeprazole daily to prevent damage to my digestive system and the exciting weekly Alendronic acid and then 1000g Vit.D and ensure I eat enough dairy produce to equal 1000mg Calcium daily , all to prevent osteoporosis which can be caused by prednisolone on post menopausal women. so more tablets than I have ever taken in my life! I will be glad when I return to normal and tablet free but that will take somr time yet.
I've been on pred for 13 years - never taken omeprazole for that, only when my rheumy uses high dose NSAIDs for other back pain problems that are associated with PMR, I took 4 tablets of alendronic acid before doing my homework and waiting for a dexascan to be done - no need for AA, another 3 dexas later, still no need for AA. No longer take calcium - make sure it is in my diet instead. I do take vit D, otherwise the level falls steadily for some reasons despite being outside a lot and living far enough south to theoretically make vit D all year.
It is a very English-speaking fad to dish out all these tablets willy nilly,
I stopped the calcium too and increased it in my diet. Last blood test showed calcium level was absolutely fine. Like you, I continue to take Vit.D3 though.
I had the pneumonia vaccine after I had been on pred for a few months and do not remember any adverse reaction. As I had not had any vaccines of any kind within several years prior to developing PMR there was no relationship there. I was not on 10 mg during this past year, but in the space of 13 months I had 7 vaccines (3 Pfizer, 1 Moderna, 2 Shingrix, 1 seasonal flu). If anything the Shingrix and Moderna have helped my pred taper, the others all being rather non-events. As you are reacting badly to vaccines I wonder if you are sensitive to any of the ingredients? I know some people are allergic to some ingredients in vaccines, not necessarily to the actual immune-stimulating substance. So could you find out what kind of flu vaccine you had last time and maybe get a different one this time?
It's amazing what our bodies have to accept. Like you 7 vaccines, and 2 lots of blood taken!...have never seen so many needles coming towards me in 1 year....and have yet to have another Shingrix and an infusion!....
Thanks for giving me your time and advise in answering my questions. I was only diagnosed in April so this is all new to me and I used to be quite active and was a Physiotherapist ( so to our profession the right activity and exercise will help any illness) . But after not being able to move shoulders or hips for approximately 6 weeks and having quite a lot of pain at the worst point until Prednisolone eased everything, then Exercise was impossible! Thanks for your advise on vaccines and it is good to communicate with someone who has had PMR as I know nobody who has this rather debilitating autoimmune disease.
Pfizer have actually said that their Covid vaccine can trigger PMR. That seems to be true of other vaccine and sometimes even just stress is the final straw on the immune system.
Thanks for giving me your time and advise in answering my questions. I was only diagnosed in April so this is all new to me and I used to be quite active and was a Physiotherapist ( so to our profession the right activity and exercise will help any illness) . But after not being able to move shoulders or hips for approximately 6 weeks and having quite a lot of pain at the worst point until Prednisolone eased everything, then Exercise was impossible! Thanks for your advise on vaccines and it is good to communicate with someone who has had PMR as I know nobody who has this rather debilitating autoimmune disease.
It sounds very like me before I was diagnosed. I slowly was in more and more pain. My doctor said I had a virus. In the end I was diagnosed by a rheumatologist. The steroids were like a miracle. We really have to learn that we have an illness and PMR is life changing. There are a lot of plusses I have found, I have learnt to say no. I now pamper myself every so often and have slowed down and now smell the roses.
Mine started after my Flu jab and first booster were given on the same day and nothing will persuade me that this was not the cause . (only my opinion)
Thanks for your experience with vaccines. I have now been offered flu vaccine and the new covid vaccine together in autumn, but I am sitting on the fence and not knowing which way to jump after my experience ! Have you had vaccines since your diagnosis?
I am convinced that the Covid vaccine triggered/caused my PMR. Most believe that PMR was an underlying condition or one’s immune system was already overloaded, I’m not sure I agree with that theory. Before the Covid vaccine I had absolutely no indication of either. I was a healthy, strong, active 60yo, I was very rarely sick my whole life despite being a nurse for 30 years and not having a flu vaccine for most of those years. According to Pfizer documents 3500+ people developed autoimmune conditions during trials. No more jabs for me.
Just bear in mind that the vast majority of us were also fit and healthy pre-PMR and developed PMR long before Covid was a thing, Many blame the flu or the shingles jabs - I'd had none of them pre-PMR and neither had a lot of others.But we still developed PMR.
I understand, but I don’t think we can discount the fact that many have developed PMR as well as a multitude of side effects due to the Covid vaccine. Mind you, as a health professional I’m am NOT anti-vaccine, I believe that vaccines are vital to eradicate many diseases, polio for example, but I also think we have gone too far in the other direction trying to control every disease process, germ, bug that comes down the pike and in the process damaging our immune system decreasing our body’s natural ability to fight them off.
I'm not discounting it - just saying that the number of cases triggered by the Covid vaccine is quite small compared to the enormous number of cases of PMR over the years. And the chemical effects of vaccines are pretty minimal in comparison to the effects of polio or smallpox - and more recently Covid. Or have you forgotten the state we were in 2 years ago already? Or the effects of polio - though you are a bit younger than me so you probably don't remember as many cases in calipers as I do. And they were the lucky ones.
You misunderstood me, I completely agree that vaccines for polio, measles, mumps etc are absolutely necessary, mainly because those vaccines prevent the disease virtually 100%, and they have been well tested throughout the years. Unlike the Covid vaccine which did not go through the rigorous testing required of all other vaccines, and it does not prevent you from contracting or transmitting the disease and the same goes for the flu vaccine. It only limits severe disease. As far as the number of cases triggered by the vaccine being small compared to all other cases does not make those cases any less detrimental or real.
They DID go through exactly the same testing - much of it had been done previously for SARS and MERS vaccines. And then the stages were squashed - there was money being thrown at it and so no waiting around for funding to arrive to go onto the next stage. Most of the development time for vaccines is occupied by waiting and negotiations for manufacturing it with no-one taking risks. With Covid financial risks were taken that would never be taken normally. Even the evidence processing was being done as it went along, instead of waiting until they had it all to hand.
No it did not undergo normal testing, normal clinical trials last for years, in order to determine the efficacy of a drug/ vaccine, and to determine long term and rare side effects. The Covid vaccine was developed in a year with all clinical phases being planed and executed with in that time frame. I didn’t intend my initial comment regarding my belief that the Covid vaccine triggered my PMR would morph into a debate on the benefit of the vaccine, but I should have known since the same thing happened when I stated I declined steroids as a treatment on another post. I am not advocating either position on the vaccine or treatment, what I do advocate is to do what is right for you. I respect peoples decisions in getting vaccinated/boosted and taking steroids for their treatment, but I expect the same respect for my decisions in return, especially since it does not effect anyone but me. By the way, 30 pages of side effects, some severe, 3000 +/- autoimmune conditions as part of Pfizer’s clinical trials. I think we should have had that information to make an informed decision.
They only last for years because they have to acquire enough subjects and exposure - that wasn't a problem with Covid lthough the trials had to be moved around the world to get the exposure to the virus required.
I suggest you read Vaxxers: The Inside Story of the Oxford AstraZeneca Vaccine and the Race Against the Virus by Sarah Gilbert and Dr Catharine Green. They explain how the process was concentrated into such a relatively short time and how some stages had been completed before Covid appeared.
No doubt you will say they are lying. I have faith in my fellow scientists.
Stages yes, clinical trials no. I am not against the vaccine, it saved hundreds of thousands of lives, what I have however is a healthy skepticism of anything developed during mass hysteria, and then forced on people against their will under threat of loosing their lively hood and freedom to determine their own fate, by people who think they know what is best for me. Most if not all of the so called “Covid misinformation has in fact been proven correct. So by all means continue to follow blindly along, I will continue to research and verify befor I trust the hysterical crowd and the government, because lord knows those two entities have never created problems before. The conversation is done
Yes I had my second COVID booster without any problems but that was hopefully due to all my medication for PMR
Hi Helag,It’s a interesting topic and conversation.
I had Pfizer vaccine July/August 2021. During that time period, I was slowly but surely going downhill with all the Hallmarks of PMR.
Was on tapering regime of Prednisolone for 10.5months without any flares . Stopped taking prednisolone from the 10th of July 2022, and never felt better, hopefully it stays that way.
By the way, I never had a flu vaccine in my life and last I took antibiotics was around the early 90’s. So for me, the two doses of Pfizer vaccine was the end of my vaccination program forever.
Importantly every one should be able to make meaningful decision whether or not to have the covid-19 vaccine or boosters.
Hi Helag, I'm not going to get involved into where the main body of this post has led other than to say that I can investigate and research, listen and read and don't suffer from, or get led by, mass hysteria. I just wanted to say that I was diagnosed with PMR before Covid came along, and whilst on fairly high doses of Pred had my first Covid jab and also my usual flu jab which I have had for many years. Neither caused me any problem and I have had no adverse reaction to any of the other Covid vaccinations/boosters (2x OAZ and 2x Pfizer) that I have received and will happily be taking my usual flu jab later this year as well as the next Covid booster. You mention that you are taking Alendronic Acid, I was offered AA but asked for a DEXA scan first to enable me to see the state of my bones, those results were excellent so, with agreement from my doc, we put off taking AA with a DEXA scan every two years to monitor how things were going.
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