Covid to pmr: Can’t help wondering if COVID has... - PMRGCAuk

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Covid to pmr

Uglow profile image
29 Replies

Can’t help wondering if COVID has pushed up numbers of pmr and fybromyalgia patients. I now personally have been told by 7 new diagnosed people that I know that they had covid then got pmr or fybromyalgia about 2/3 months later. None diagnosed with long covid.

Just wondering!

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Uglow profile image
Uglow
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29 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Not sure that can ever be answered, and certainly not yet…..unless everybody reports it through ‘official’ channels, it would be hearsay and guesswork.

pal-o-mine profile image
pal-o-mine

My daughter suggested that to me when I told her I've got PMR - the first thing she said was could it have been caused by the Covid vacine (1st one in February, 2nd in April). She thought it might have triggered my PMR which started in July. I must point out I haven't had Covid itself; been too busy keeping totally safe as my other half is vulnerable (and now I guess I am too).

PMRpro profile image
PMRproAmbassador in reply to pal-o-mine

Possibly - but it would have been the last straw that broke the camel's back. There is no single cause of PMR - it is a culmination of years of insults to the immune system which can include illnesses, infections, trauma, environmental/chemical/emotional/physical factors, and eventually something makes the immune system flip out and start attacking your body because it no longer recognises it as self. Some people blame the flu jab or the shingles one - loads of us had never had either a flu or shingles jab. It can be anything.

pal-o-mine profile image
pal-o-mine in reply to PMRpro

So this has got me a bit concerned now as I will be going to be getting (if the doctors get them in) a flu jab in about a week. Over the years I've had pneumonia on three occasions. As I've just reduced my Preds to 13mg from 15mg, do you think this may cause issues? I will make sure to tell the doctor about this when I go.

Uglow profile image
Uglow in reply to pal-o-mine

Don’t worry seeWhat docs say.

PMRpro profile image
PMRproAmbassador in reply to pal-o-mine

I don't see why it would be any worse than anything else.

HeronNS profile image
HeronNS in reply to pal-o-mine

I've never had problems with the flu shot, but have never had the high power one generally given to older people as where I live those are only given to residents of long term care homes. Nor do the ones available here contain an adjuvant which I think is often what people react to rather than the base vaccine. I started having the flu shot about two years into being a PMR patient. Have also had a pneumonia vaccine suggested by my doctor as she felt being on pred put me into a higher risk category. I should add I've never been prone to catching either flu or pneumonia. No reaction to speak of re covid vccine (Pfizer) although when I had my first one I was in the midst of an unprecedented PMR flare so don't know whether it affected that either way. The only vaccine I've had a strong reaction to was the first Shingrix shot which I had at the end of July, and which if anything somehow seemed to help me taper a bit more successfully for a few weeks as I've still been wrangling with the flare. Go figure. 🤷‍♀️

Short answer - unless you have a known allergy to a vaccine ingredient, you are better off with the vaccine than without. :)

pal-o-mine profile image
pal-o-mine in reply to HeronNS

Thanks HeronNS - I will make sure to tell the doc giving the injection (this is not the same doc who has been dealing with my PMR) all about my meds etc. because she's not the best at listening, from my past experiences with her. I was given the pneumonia vaccine several years ago and was told that it will not need to be repeated - so one less jab to worry about :)

HeronNS profile image
HeronNS in reply to pal-o-mine

Have you had pneumonia since you got that vaccine? There is a second one which covers different strains and at risk people should be offered that as well (given at least a year after the other one). My husband has had that one. He used to have pneumonia every May for some reason so apparently a vulnerable bloke.

pal-o-mine profile image
pal-o-mine in reply to HeronNS

I can't remember off-hand when I had the jab but think the last pneumonia was pre that. Hadn't heard about a second jab for it and would have thought docs would be in touch - but then they've got more important thing to worry about right now.

HeronNS profile image
HeronNS in reply to pal-o-mine

It's not offered to everyone so I wouldn't be concerned. My husband had a number of chest infections after his initial pneumonia shot and I think they just decided he was at risk and could use the additional protection.

pal-o-mine profile image
pal-o-mine in reply to HeronNS

Just checked and pneumonia jab was after my last bout - so looks like it did the trick. Mind you, as I hardly ever go out, since Covid, it might just be I haven't been exposed - who knows.

HeronNS profile image
HeronNS in reply to pal-o-mine

I expect it worked. Hubby stopped having pneumonia every spring after he got the first one. It was years before they decided he should have further protection. Let us know what medical advice you get. :)

pal-o-mine profile image
pal-o-mine in reply to HeronNS

Will do.

mloyuken profile image
mloyuken in reply to pal-o-mine

Interesting subject. I have been considering the topic since my PMR initiated 10 - 14 days following my 2nd Moderna jab. Considering reporting under the V-Safe system but they seem to only be interested in myocarditis.

daisygreen9 profile image
daisygreen9

i was wondering the same uglow,i started with my symptoms of pmr after covid jab .... i wonder if thete is any data on increased diagnosis ?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to daisygreen9

As I said, not unless it’s been reported as a direct result of vaccine and that’s very difficult to prove. As PMRpro has explained - it may well be the final straw - but not the single reason that triggered PMR.

keeptalking profile image
keeptalking

Hi. If you’re in UK it would be worth reporting your diagnosis following the vaccinations to the yellow card scheme. That’s the way data can be obtained if others are reporting similar reactions.

PMRZ profile image
PMRZ

I don’t know if it’s co-incidence but I joined this forum because my partner had an extreme reaction to the vaccine. He had suspected for quite few years that he had PMR, but when I had to call an ambulance for him the day after the vaccine, the doctors took it more seriously! He has since seen a specialist (privately) and within 24 hours of starting on steroids he was a different person. So yes, I agree it was the final straw …. However, the 2nd jab caused no side effects although he did rest for 48 hrs beforehand and took paracetamol every 6 hours for a few days before and after, as suggested by his doctor.

cycli profile image
cycli

Final straw definitely. Common factor amongst most of this group who have one or both conditions is that we seem to be driven people always doing stuff or pushing the envelope of our abilities. I just think it loves people like us who give it the chance to sneak in and do its work. Teaches us a lesson I guess that even we can't buck nature. Still, doesn't stop us trying to find new ways to achieve what we want though does it.

AshPen9 profile image
AshPen9

I started with PMR symptoms very suddenly, a week after my second Coronavirus jab.

pal-o-mine profile image
pal-o-mine in reply to AshPen9

Mine took a bit longer to show up after the last jab (about 3 months). I went to bed with no aches or pains anywhere and woke the next morning to hardly being able to do very much at all. Thought at first it must have been me doing sit-ups the evening before and maybe trapping a nerve in my back - but it only got worse over the following month, until I went to doctor and had Pred prescribed. Such a relief gained; in about 6 hours was 98% back to normal. Feeling like a new woman by 2 days later. Better than before :)

Jude2309 profile image
Jude2309

I've been wondering about this as well. I had covid (although not tested back then) in the first wave and diagnosed with PMR a few months later. I too have heard, anecdotally, that there are a lot of people in the same position 🤔

Lovetobe profile image
Lovetobe

I too feel that my covid jab as pmrpro abd Dorset lady said was my final straw, having fibromyalgia already, and 4 years of a very stressful divorce, the last since month post covid jab in March extremely worrying. Hey presto symptoms started and finally diagnosed end July 😳

kiwijenn profile image
kiwijenn

Israel has vaccinated over 80 percent of population and has amazing data base about reported problems w “severe inflammation response” as well as others. So yes it’s being recorded as an issue.

Nursey30 profile image
Nursey30

Hi.I had c19 in November 2020 and in January this year ,suddenly,all of this muscle pain started,getting worse everyday.I had no idea what was causing it.Eventuzlly ,8 months later ,diagnosed with PMR.I asked if it was long covid but didnt really get an answer.But as PMR can be triggered by a virus I think it's a possibility. Strangely too,I seem to be getting cold sores more frequently, another virus.Who knows???Time will tell l suppose.

PMRpro profile image
PMRproAmbassador in reply to Nursey30

Definitely a deranged immune system ...

WeAreAllMutants profile image
WeAreAllMutants

My PMR journey began one month after my second COVID shot (Pfizer). Guessed it was sciatica and took up exercises for it. When it worsened, I went to a physical therapist. Two PT visits and exercise homework only intensified the pain and added shoulder bursitis. When I could barely roll over in bed and was unable to move a pillow around, I went to my doc.

After blood tests he told me to take 20mg pred before leaving the pharmacy - it was a miracle.

It was 3.5 months from my second vaccine shot to PMR diagnosis.

My doc said he hadn’t heard of a connection between the COVID vaccine and PMR. Maybe there is a connection, maybe there isn’t, but everyone who finds an apparent connection in their own health should report it.

Otherwise healthy 70 year-old male.

P.S. Love the wise, kind, and gentle folks contributing to this website. Thanks, all!

PMRpro profile image
PMRproAmbassador in reply to WeAreAllMutants

You have to listen to hear the connection - and why shouldn't it be the final trigger? The flu and shingles jabs can be that final straw - so can many other things. If it has an effect on the immune system - anything will do it.

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