Sudden onset pmr

[Microbe1943]

I wonder how many of us sudden onset pmr folks see a direct connect between Covid Vax and onset? My pain came in day 14 after 2nd Moderna last feb I’m tapering from 10 mg pref now on 8 Took some months to get her pain mostly under good control Sharon s

[Seacat30]

Search the forum and you will find quite a few people wondering this. In my case sudden pain in neck 5 days after first Astrazeneca vaccination moving on to hips about a week later. Then shoulders, knees and back.

[Microbe1943 in reply to Seacat30]

It is good to know this response. Seems a catch 22. Covid possibility or PMR! Thanks. I’ve seen a good number of posts on this but the “sudden onset of PMR” description got my attention!

[PMRpro Ambassador in reply to Microbe1943]

According to many doctors PMR starts suddenly: the patient goes to bed fine and in the morning is unable to get out of bed or raise their arms. I think the final bit can be sudden - it has happened to me with flares - but very often when the patient looks back they can identify problems over previous months which have crept up slowly. A stiff neck that recurred, low back pain, sore shoulders or biceps when carrying something, vague but persistent problems.

[Microbe1943 in reply to PMRpro]

Fir me I was fine on day 12 snd day 14 agony in muscles. I never had heard of PMR. I actually wrote in my journal “something is very wrong w my muscles”. It was startling. So overnight aging. Took 4 months to get diagnosed. SED rate was 47. Rise ti 100!!!

[Sweetpeasoprano in reply to PMRpro]

My experience was that it seemed to coincide with having the COVID jab, but when I looked back, the symptoms of PMR had started very gradually a few months before the really crippling pain and classic symptoms began.

Fortunately I was diagnosed very quickly, thanks to an osteopath who recognized my symptoms and suggested I just told my GP what it was.

[PMRpro Ambassador]

This has been discussed quite a lot - and quite a few of us developed flares after having a jab though in most cases they were short-lived. In my case I flared after a Moderna jab but after the booster dose of Pfizer I have felt much better and able to reduce my pred dose.

However - my usual comment coming up: there is no single cause of PMR. It is considered that most autoimmune disease develops when the immune system finally flips in response to a straw that breaks the camel's back. During our lives the immune system is under attack from all sorts of things, not just infections. Illness, injury, stress of all sorts, emotional and physical included, environmental factors and chemical exposure all can have an effect on the immune system. Eventually something makes it snap and it goes haywire, turning on your body because it is no longer able to recognise it as self. It may be a vaccine - or the illness the vaccine was to prevent. It could be a bereavement, illness, workplace problems - all manner of things and no two people have an identical run up to their PMR appearing.

And one thing here is sure: PMR doesn't kill, Covid does. Despite my flare and knowing about the effects of PMR better than most - I will never turn down a jab.

[Crocus123]

My PMR came on over about 3 weeks but the start was hard on the heels of my second AstraZeneca dose. I tend to think most of the vaccine reactions also occur post infection (and are more likely then) so as a susceptible person I would have developed PMR if I'd caught covid anyway.

[Bedwell]

Oh definitely! I have posted this before.. but the return of pmr was triggered by my second Pfizer vaccine! I have no doubt! And I’m not having the booster!! I’ve had Covid .. am still on the long Covid haul ! Enough!

[Purplecrow]

More power to you...but I will have the vaccine and boosters as the come along. PMR does not kill. On the other hand, ... as evidenced by the thousands who have died, ... Covid does!I had PMR flare after second dose. Upped pred for a few days, then dropped back to lower dose over a week or two. After booster, no problem.

I would recommend you reconsider your anti booster position, and get the shot. You can rant and rave all you wish, but only if you are alive to do it.....

Think about it.

Kind regards, Jerri

PMR diagnosed 2013.

[mgrogers99 in reply to Purplecrow]

Excellent and realistic thinking. I had covid a year ago and am in treatment for long covid. Two people I knew died of it before vaccines. Give me an injection any day.

[Smallstepsforward]

Hi there, my rheumatologist has told me (based on my timeline of covid infection and vaccine doses) that the infection likely triggered covid (PMR symptoms were very mild ish) and the two vaccine doses in feb 21 and May 21 exacerbated it. Or the vaccines triggered it alone. Certainly three weeks after my first dose, I had a sudden onset of PMR symptoms. They are all working off raw data for now but it will be interesting to see what future clinical studies show. He said he’s seen a massive uptick in inflammatory conditions since March 2020.

[Pr0jection]

My PMR didn't come as a result of having the vaccination. It came on just after my husband and I had a really bad attack of 'flu at the same time as Covid was rearing it's head. I'll always wonder if that was the trigger.

[PRL1957]

I was unsure whether to post this reply, as I don't want to be seen as part of the 'tin-foil hat wearing, anti-vax cohort', but this is how I was affected.

I have 'sudden onset' PMR, following 2 Pfizer vaccinations. In my case, I had no previous history of PMR. Coincidentally, I had been monitoring my temperature daily and noted a gradual rise from my normal 'baseline', that started slowly after the first jab (in February 2021) and became more pronounced after my second (in April 2021). The PMR started about 2 weeks after the second jab and I found it very debilitating (very weak, aching limbs, difficulty walking and unable to carry a couple of shopping bags).

After about 6 months of hoping it would improve on its own, I gave in and talked to the GP, who diagnosed PMR (based on a very full set of blood tests) and prescribed prednisolone (starting at 15mg/day) - which provided almost instant (within 3 hours) relief. After 3 weeks, I started to taper down my dose, but the PMR still seems to be continuing in the background (I got down to 7.5 mg/day, but have flared again).

I think the cause was the mRNA-based vaccine. According to the scientific and medical literature, there are some cellular receptors (Toll-like receptors, TLR) that interact with viral RNA - and that is what the Pfizer, Moderna and AZ vaccines deliver, in different formulations. Although it is an uncommon outcome (e.g. my wife had exactly the same vaccine and is OK) it seems likely that interaction triggered my autoimmune response.

I know Covid-19 is a potential killer, but I am in a fortunate position of being able to largely shield myself from the outside world, using 3 layers of masks and hand sanitiser gel when I do need to collect a few bits of shopping from the local village shops. What I am hoping for (and rather annoyed that it is not available yet in the UK) is a protein-based vaccine, such as that being developed by Novavax. It seems to be well-known by immunologists etc. that protein vaccines cause fewer side effects. (And they are easier to store, so delivery to pharmacies or GP's surgeries would be easier.)

[DorsetLady PMRGCAuk volunteer in reply to PRL1957]

There are many who feel the same as you…and also blame other vaccines…annual flu, shingles etc, etc.

It’s usually not the vaccine per se, but that may be the final straw in a longer list of occurrences that have set your immune system in turmoil. If hadn’t been the covid vaccine, it would have been something else.

[PMRpro Ambassador in reply to PRL1957]

It won't matter WHAT type of vaccine it is, there will still be the potential to trigger PMR in pre-disposed patients. Bear in mind that the vast majority of the people on this forum developed PMR or GCA long before Covid and its vaccine was even a twinkle in someone's eye. There are those who will swear it was the flu vaccine and that IT should be banned. Or the shingles jab. Or the flu. Or shingles.

I've had PMR longer than most but nothing would persuade me to forgo any Covid booster I'm offered. Moderna appeared to cause a flare - though my husband was terminally ill at the time. On the other hand, the Pfizer booster has coincided with me being able to reduce my pred dose from 19 to 11mg in less than 2 months. But that has coincided with his death,

[PRL1957]

True - other vaccines and infections can also trigger autoimmune conditions such as PMR. But in my case:

1) My temperature history and the way it changed, closely following the Covid vaccine jabs, provides quite compelling evidence. And my temperature responded (albeit to different amounts) after each of the jabs. Yes, that could still have been coincidental (e.g. response to some other infection), but my wife did not react in a similar way (i.e. that tends to rule out a communicable infection).

2) About 3 months before my first Covid jab, I received a flu vaccination (which was protein-based) without any side effects.

3) Medical literature reports a few similar cases. Yes, it is rare, but not unknown. And a plausible explanation (interaction of mRNA with toll-like receptors) is known.

[Karenjaninaz in reply to PRL1957]

I had an asthma exacerbation within 2 weeks of the senior flu vaccine and ended up in hospital 4 days in Oct. I am still on oxygen at home. Never had a problem with my yearly flu shots before but I am older(79). This can happen with elderly who have pulmonary issues. Absolutely no problems after Pfizer vax in March. Had my boost last Sunday- no problem. Proteins stimulate allergies in some people.

[bussell]

Just one of the many for whom the Covid vaccine was the last straw Here we are a year on though, alive and kicking. And hoping for better things in 2022. By the way, did you report your experience to the Yellow Card System?

[Liby57]

Reasons PMR include possible virus or infection, I did wonder this myself. My PMR started last year overnight. At that time I hadn’t had the vaccine but CoVid was everywhere (still is). I had never heard of PMR before and suddenly I am hearing about it all the time. I Found this link

arthritis-health.com/types/...

[DorsetLady PMRGCAuk volunteer in reply to Liby57]

There probably isn’t more information out there, it’s just you’re tuned into it, and it catches your eye!

Many of us had never heard of PMR nor GCA prior to diagnosis.

[Bennijax]

I see a loose connection…the ability of the 80mg depo-medrone injections I had every 5 weeks to control symptoms stopped, and my PMR symptoms worsened after the first, had to start Preds early March. The second vaccine dose seemed to make it much more difficult to taper, I was unable to taper further after second dose. Since the booster I’ve developed burning, painful feet and terribly sore hands and fingers. Exercise daily helps with these new unwanted ‘friends’. But I wonder, what next.

[mloyuken]

I had a similar opinion that perhaps my 2nd Moderna triggered the PMR, which occurred 3 weeks following. I have always had back issues (ankylosing spondilities) and had extensive chiropractic sessions last year, but fine over the winter up to the 1st shot. Still makes one wonder if it was a trigger, even though "PMR Pro" has very good arguments against it as a trigger. It is like I was find and suddenly the shoulders and hip were attacked. Fortunately, my GP diagnosed it rapidly when I determined what special doctor I should visit. An unknown disease to me, what is it, what should I do. Well finally after a month of pain I selected my internist and he was excellent. As to opinions, I too did not hesitate to get the Moderna booster and had excellent results.

[cranberryt]

I had sudden onset in 2019 before Covid. But I also had a massive flare one week past my Covid jab.