I've done some Googling and found these rather interesting articles. The possible link between Covid vaccines and PMR/GCA was drawn to my attention by my cousin telling me about her friend in Australia who was recently diagnosed with GCA. The medical establishment put the cause down to the Covid vaccine combined with the extreme stress she was under at the time. She was treated with a high dose of pred then quickly reduced. I have yet to find out if she went down to zero but I am told she is fully recovered now.
Interesting articles. I Had 1st dose of Pfizer vaccine in July 21, began to experience aches and pain in the body. 2nd dose of Pfizer vaccine in August 21’, slow but surely went downhill, extremely poor mobility, unable to walk or dress, pelvic girdle, hip muscles, biceps all cease to function. On the 1st of September 2021, seen by GP diagnosed with PMR with further confirmation by Consultant Rheumatologist in October 2021.
On prednisolone from September 2021 till July 2022, where I ended my tapering regime. with careful monitoring of my bloods ESR and CRP over the months.
Coming into my 4 th month without any prednisolone, feeling great and back to my normal self.
I took the decision to end my vaccination program in August 2021.
I'm going to step in here and say that my experience has been the exact opposite. Usually we won't hear about good results from vaccines. One just goes on with life. Bad effects of course require attention, and I'm sorry you've had problems. For context I've had PMR for some time, been on pred since 2015.
I had 3 Pfizer shots, which apart from a sore arm were basically non-events. For the first one I was struggling with a serious flare and had reduced my pred dose to 5 mg but was unable to maintain that for the two weeks after that I wanted to. However, tapering at a pace related to PMR rather than desire for a good immune response continued although too slowly for my liking. That all changed when I received Shingrix vaccinations, to which I reacted quite strongly, excessive fatigue for a day. Somehow that vaccine made my taper much more effective. Instead of constantly getting stuck and even having to increase I was able to carry on with a steady downward trajectory, although still very slowly. I had a fourth covid shot, this time Moderna, and reacted very much the same way I had to Shingrix, which I didn't expect after no side effects from Pfizer. Taper continued, and this time I felt very much as though PMR wasn't even lurking any more. Have since had the Moderna bi-valent and had a reaction, although not as strong as the one from the 2nd booster. I have to say that at present I think I may be at my lowest best dose again (2 mg), that PMR is still lurking, but as I said to someone on the forum the other day, I'll keep trying another .5 mg drop from time to time - kicking the tires, not going for a drive!
Perhaps I should add that my husband (triple vaxxed at time) had covid in the spring of this year, before I'd had Moderna but after Shingrix series was done, and I did not catch it from him. I think I'd rather put up with PMR (or if I don't have PMR yet the chance a vaccine might trigger it, as some other vaccines are known to sometimes do) than have covid. Because there's now a choice of different kinds of covid vaccinations, if one is allergic to one kind, another could be perfectly all right.
It shows how different we each are to others, our individual chemical, biological make up is unique to who we are.
But that people are getting PMRGCA after a Covid or Flu jab means that this information must be taken more seriously by our medical establishment.
I have had adverse reactions with every vaccination, and possibly with each of two boosters so far, (but can't swear to that); each vaccination means whatever tapering I have done is undone as the flares require I up the pred dose. I'm wondering whether to have any more. I just had Covid for the first time, it was horrible but I think I got through it OK.
I agree. I appreciate that. Yet I am dreading having both the flu and booster again. Having Covid itself caused issues. My GP advised I up the does of steroids I take. I went from 8 to 12 and that has helped the symptoms from Covid hugely and just today tapering to 10. The booster and flu jab may cause more stress and other need to up the Pred intake yet again, I feel like I am constantly on a roller coaster, one thing on top of another.
The woman who runs the B&B where we stayed on our recent trip had childhood asthma and ongoing problems from that. She reacted so badly to the first covid vaccine she had to go to hospital (I did not ask for details but it might have been anaphylactic shock). She has received her other primary and booster doses but always in hospital setting just in case. Because of her health history she can't afford to have covid. Also I don't know what vaccine she had but it was most likely Pfizer, although it seems most of the bad reactions noted in Canada were caused by AstraZeneca, which was not widely used here.
Fantastic that you have achieved this. I started on pred the same time as you but on 40mg. I'm now down to 7mg where I'm stuck for a few weeks before trying to reduce again.
Me as well, although I wasn't diagnosed until Jan. 2022 after 5 long months of agony and 4 long months of semi-agony right after my first Covid jab in May of 2021. Downhill until second jab, August 4, 2021 and 10 days later, full blown PMR (although I didn't know what it was), except to say my GP at the time diagnosed me with "old age". Finally in December 2021, after some bloodwork which I had to insist upon for possible RA, my CRP was 42 and he referred me to a Neurologist on a emergent basis. Sure enough, PMR. Still trying to get the Pred down from 20 mg and stuck around 12.5. We bit of a flare in there. I'm glad to hear you've come down to minimal Prednisolone and doing well.
It is true that a vaccine is sometimes blamed, but in most cases it will be like the case of your friend - a final trigger on top of previous issues, like extreme stress.
My response to Broseley was only expressing my experience with the Pfizer vaccine followed with the diagnosis of PMR.
I never in my life had a flu vaccine, it’s about 30 years or so since I had antibiotics for a strong dose of common cold.
I have been retired from the Health Service about 6 years prior to taking the vaccine. I was walking about 2 km every day and perfectly fit prior to the vaccine. Every year I would travel to the far east for a month. I would get my routine bloods done every six months.Everyone has their own experiences in health and wellness.
I didn't have flu vaccines (except the year of h1n1 to protect the young people who were dying from it) until after I got PMR, and even then I waited until the second year. I'm now in a high risk age group and live with someone who has always been much higher risk than I am. I wasn't even going to get Shingrix because there is concern about its novel adjuvant. I just wanted to point out to the innocent reading this thread that there are two sides to the story. You (and in fact a couple of people I know) have had adverse reaction to a covid vaccine. But then there are those who don't, and a few like me who appear to have benefited. My theory is that the novel adjuvant in Shingrix did something positive to my immune system, but of course there's no way to prove it!
My daughter pointed out to me that when Pfizer and Moderna were developing their vaccines Pfizer went with the lowest dose which would be effective, and Moderna with the highest that would be safe!
I was walking about 2km every day with PMR anyway. I had a brief flare with one of 4 vaccines but was still walking. But 6 months after my husband died and my 3rd jab I had a massive flare that took me well above 15mg pred to manage. It happened 3 or 4 weeks after starting on a statin at the insistence of a cardiologist. It wasn't the vaccine - it might have been the statin and it might have been just the whole experience of Covid and a dying husband over the previous 2 years. No way of knowing.
I developed PMR after my second Pfizer vaccine. I had no noticeable side effects at the time, and haven't reacted to any of the boosters either. So it could be coincidence I guess.
I don't think there is any dispute that the Covid vaccines would have triggered PMR and GCA. Something has to at any time and it is known that flu and shingles vaccines have done it in the past. The fact that such large numbers of people have had multiple vaccines means there are likely to be relatively high numbers of patients where it happened. But if they hadn't - it might have been the flu jab, or the next stress on the immune system such as the stress of the lockdown, losing your job, bereavement, any other illness and Covid itself.
The vast majority of the people on the forums developed PMR or GCA long before Covid, without either Covid or the Covid vaccines. You can't blame them alone. And if the vaccine did it - it is pretty likely that a severe dose of Covid would have too. In fact, Long Covid is almost certainly an autoimmune disorder triggered by Covid. But as bgchess shows, quite a few cases developed after the vaccine resolve pretty quickly, unlike the traditional causes the rest of us experienced.
I was a novice with my medical condition (PMR) in September 2021 and through this group forum, I have learnt alot about the condition and tapering regime. As you mentioned, I am the exception rather than the rule with PMR, cause you wouldn’t come across too many people that will overcome this medical condition within 10.5 months. I would like to extend my sincere wishes and best of health to all the group members. Do take care, be positive and stay strong to manage this medical condition 🙏🏼
My rheumatologist thinks that my PMR onset was as a result of the vaccines. Like the person in Australia, I was under extreme stress at the time of the vaccinations. I have taken the difficult decision not to vaccinate for the foreseeable future. I can’t take steroids so am managing it with diet, supplements and lifestyle. I’m doing quite well, although pmr has changed my life totally. But I’m adjusting.
I’m in my final year of a masters in nutrition so have done some research into the connection. I do think that the effect of the vaccination depends on how you are physically at the time - your own physiology, stress, gut health etc all can play a part in any after effects of the vaccine. Hence most people sail through the vaccines. Others not so much!
I was healthy (as far as I know!) and have not reacted to any of my vaccines. My hubby was ill for a week after each of his. All I had was a bruised arm. However I did develop PMR 2 weeks afterwards.
It would probably be "dismissed" as Long Covid - and there is no escaping the fact that a lot of Long Covid patients have symptoms that parallel autoimmune diseases.
I was fit and healthy still ballroom and Latin dancing at age of 68. Had first vaccine ( astrazenica) 3 days later cldnt get out of bed with stiff legs and usual PMR symptoms. Have since also been diagnosed with GCA. I have no doubt that was vaccine and many Drs now say to me that very likely. Thanks to methotrexate and steriod injections I am dancing again. It is a relief to see evidence that I was right that was the vaccine since there was and is so much denial. Yes I was under stress but who isn't? Yes I had occasional aches and pains but who doesn't? There was no coincidence or final trigger in my experience. Thanks for this thread
"There was no coincidence or final trigger in my experience"
Yes there was - a vaccine. And I say "A vaccine" deliberately because other vaccines can be the final straw - just as stress can be, The vast majority of people who have had PMR found their final trigger long before Covid was a thing, never mind the vaccine.
Well yes there was - the immune system was triggered to become deranged, That is the common factor in all of us, our immune system went haywire, but there isn't another inescapable common factor except MAYBE a set of genes that hasn't yet been identified, Everyone's back story differs and while there are other commonalities they are rarely in the same order related to one another.
Apart from the genetic predilection which none of us is aware of, the previous history also doesn't turn up and leave graffiti saying "I was here". You have had infections, injuries, used cleaning products, been under stresses of one sort or another, All of them poked at your immune system and upset it. It doesn't have to have been weeks before, it goes back years. And eventually one poke makes it overbalance and something breaks. Result: a haywire immune system, unable to recognise body as self and so it turns on various body tissues and attacks them in error. What you are diagnosed with depends on what is being damaged. It isn't just PMR.
PMR isn't the disease itself - it is the name we give to a set of symptoms that seem to often go together that is caused by an underlying disorder and there are several. That's why pred works to relieve the symptoms in a wide range of patients - and why methotrexate and other drugs work for some though not others. Same applies for most so-called steroid sparers - they are the specific spanner sizes, pred is like a mole wrench (a locking universal grip tool) which fits a variety of shapes and sizes.
For the majority of people who reacted to the vaccine it seems to be a fairly short derangement and they get off pred fairly soon. I suppose this may be why many doctors have this view of PMR being gone in a couple of years - but it does depend on which variety of PMR develops and I have no idea at all why they differ. Although it does seem the process may be more complicated where there was a delayed diagnosis or management in the early stages was erratic for some reason (another illness for example or a doctor who didn't go about things sensibly and allowed flares). Which COULD be a learning process on the part of the immune system which it struggles to forget and leads to prolonged effects.
I don't think there is a "proper" PMR - as I said, PMR isn't the disease, it is the name given to a set of symptoms. I suppose you would class it as a syndrome:
"A syndrome is a recognizable complex of symptoms and physical findings which indicate a specific condition for which a direct cause is not necessarily understood"
I developed PMR within two weeks of my vaccine - I had a CRP of 106 at its highest (measured) value. Two other guys in my golf society of 70 ish blokes also developed it. None of the boosters had any detrimental effect. That was in May 2021 and I am down to 4 mg. Have a few aches and twinges in my neck and shoulders and think I have developed RA in hands and fingers but played my first round of golf two weeks ago (in a buggy) and am holidaying more or less as normal (which means being relatively active). The two other guys kept on playing golf all the way through (and still are). I couldn't have played golf at all!!! It is an odd disease.
PMR started 5 days after Astrazeneca jab 1. A friend's Dad had exactly same experience. All doubt as to whether that jab was the trigger has left me after seeing so many people in similar circumstances on this forum and keeping an eye on the growing body of medical research.
I have never doubted it was a trigger - but it lines up alongside all the other chemical triggers that have an effect on the immune system like drugs and vaccines as well as other chemicals in the environment.
There is a lot of air pollution in Brighton coming from ships in the Channel as well as urban traffic. This seems to have had an impact on several members of my family since they moved here.
I am also suspicious about the effects of the endless chemical usage in cleaning products, hand wash and sanitisers during the Covid epidemic.
I had a catastrophic reaction to OAZ vaccine on 14/2/2021. Eye bulge lightening headaches collapsed 3 times. Bells Palsy and angina became unstable. Diagnosed GCA and had 60mgs pred dropping to 30mgs. Face eye head pain plus all the usual arthritis pains were increased. It was months before I started to feel human and very little interest from my GP. Haven’t seen him since Jan 2020. No more Covid vax for me. I don’t think I’ve had Covid, just tonsillitis and bronchitis this month which has been brought under control with antibiotics. I’m content that I avoided Covid by isolation and I’m grateful for the way our Gov took this pandemic seriously and protected me.
That sounds similar to my cousin's friend in Australia. She ignored the symptoms and ended up in hospital when a GP friend saw how bad she was. She was apparently close to losing her sight. She was kept in hospital until the arterial inflammation 'went down'. Good job you got your diagnosis when you did. If your GP isn't interested ask to see a different one.
Interesting and thank you. However each article, apart from the introductory paragraph is not available to read in full - did you manage to read each fully? how?
I got everything for the first 2 links. The third link is to the pub med listing - somewhere in the heading of each link you click on you should see Free PMC article in red - click on that to see the entire paper. Convention has been that all Covid related publications are "free to air"
Very interesting thread. It was pointed out to me by another member and alarmingly similar to my own story. GCA symptoms 10 days after 1st AZ vaccine (excruciating burning pain in temples, tinnitus, scalp and forehead felt like they were sunburnt). Cranial ultrasound performed but no GCA evident (but had been on 6 days of 30mg Pred at this point).Same thing happened after 2nd AZ, including facial numbness on one side. No high markers at any time so Rheumatologist stuck with negative PMR/GCA diagnosis. Now have hip girdle pain to add to the mix. Haven’t given up on diagnosis yet thanks to some amazing people on here x
Intending to do exactly that, this is so helpful. To be fair, my GP has been great up to a point but she can’t get past the Rheumatology department which is sticking to its guns because I’m 54 and have no inflammatory markers.
Does she want to wait until they go up then? PMRPro will tell you markers aren't always up for you to have symptoms. My markers were up at my last check up, but as I felt fine, rheumy said he would treat the person not their bloods and kept me on the same dose of pred. Seems like they make up the rules as they along!
Is anyone routinely collecting data on PMR/GCA occurrences since covid? Also lupus, RA and other autoimmune conditions. Or is it down to someone doing a research project and therefore reliant on funding.
Yes I did do a search - thanks- hence my post. I was thinking that more thorough research needs to be done. Maybe all those of us who feel our PMR/GCA was down to the vaccine should complete a yellow card?
I developed PMR 6 hours after my 2nd Pfizer shot. I had no history of inflammatory or autoimmune disease. In Canada, patients cannot report possible adverse events (AEs) directly; AEs can only be reported by doctors. My family physician reported the incident, my rheumatologist dismissed the association as "a trigger, not a cause as such" (a rather meaningless semantic argument imo). After a year, no cases of PMR have shown up on the Canadian reporting system (not that I've been able to find anyway). There is no way of knowing if there is a causal relationship without good post market AE surveillance. The absence of my case from the reporting system illustrates how dismal post market AE surveillance has been for this new vaccine - if my case was dismissed as coincidental, how many others were treated in the same manner? Last time I checked there were only 150 or so reported cases of PMR related to COVID vaccines on the US VAERS system. That low a number would suggest coincidence but, it is estimated that only 1-10% of AEs are ever reported to VAERS. I suspect it will be years before proper surveillance can be assessed, and an honest association between this vaccine and various inflammatory conditions are properly investigated. The medical industrial complex is designed to delay safety surveillance until profits have been maximized.
I also developed PMR immediately following my third Pfizer (booster) vaccine. Initially I attributed the pain in my left shoulder to the booster.
But the pain didn't recede, and then spread to my right shoulder and then onto to my hands. It took months for my New Zealand GP to attribute the pain to PMR, and this only came about after my physiotherapist suggested that I should have blood tests done, as my pain was not a skeletal issue.
As a 60 year old male I am not the typical PMR target. I definitely think that it was the vaccine booster that triggered my PMR. I am currently on 7mg Prednisone and busy tapering using PRMpro's plan.
Many thanks to all in this group who share their knowledge and journey; we all find some gems here, to help us on our own pathway.
I was told to get a massage by a locum GP. I chose a local physiotherapist who said to go back to the GP for a blood test. They had already done XRays and an MRI on my hips and knees and blood test for everything except CRP and ESR!
Thanks for the information. I’m 72 and was diagnosed shortly after receiving the pneumonia shot 4 years ago. I did not think it was connected until now, but I think that it might be an additive they put inside the jab that might be causing PMR and not the actual immunity of it. However, a shot of anything could cause a problem with someone’s autoimmunity when it’s weakened in old age. I am much better now and completely off the pred but it was a long 2 and a half years to “relief” for me and I hope I don’t ever get it back.
Actually, I used to show Yorkies all over America and it occurred to me that in the midst of a dog Covid outbreak about 4 yrs ago that I might have met the virus back then. Show dogs were dying like flies and Covid was wiping out many kennels so I gave my dogs two scheduled shots (2 weeks apart) of a anti viral vaccine that my vet prescribed. In some dogs vaccinated they developed a mass on or near the eye that the vet said was triggered by the vaccine and would eventually go away. It did, but some grew so big we were worried they would never show again. It resolved itself eventually but then I got sick with PMR and had to give up showing. I think that this could be connect.
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