Latest COVID jab. : Am in the early days of PMR and... - PMRGCAuk

PMRGCAuk

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Latest COVID jab.

tinlid profile image
18 Replies

Am in the early days of PMR and have just been notified I can get a free COVID.jab. I am a bit worried as the only other person I know who has PMR got it the day after a her jab along with diabetes. There is no rush but I wonder if you have any advice as it is a while until I see a doctor.

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tinlid profile image
tinlid
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18 Replies
PMRpro profile image
PMRproAmbassador

There is no single cause for PMR developing, it is an accumulation of insults to the immune systems over years and eventually something is the proverbial straw that breaks the camel's back and the immune system goes haywire, is unable to recognise the body as self and turns on it causing inflammation - in our case PMR symptoms. If it hadn't been the Covid jab, it could have been the flu jab, the shingles vaccines - or the illnesses they are to protect us against, Or it might have been another illness, an accident, or stress of some sort, physical or mental or emotional.

The diabetes is unlikely to have been the vaccine - it doesn't happen suddenly but it can develop when you are on pred for PMR, especially if you were already pre-diabetic before the PMR started.

It is your choice of course - but the vaccine is the reason people are no longer so sick with Covid, but it is still a nasty disease that can cause lifetime problems, especially in the immunocompromised which we are on certain medications, including pred.

tinlid profile image
tinlid in reply toPMRpro

Many thanks for replying. Good advice.

PMRrunner profile image
PMRrunner

I've had PMR since 2018 and have had all COVID vaccinations offered. I had a flare after one booster but otherwise have been fine. It's a personal choice but I will continue to accept all boosters offered

tinlid profile image
tinlid in reply toPMRrunner

Thank you for responding. I intend to go for the vaccination.

Bcol profile image
Bcol

Think I'm on number six or seven Covid jabs, maybe more, all since getting PMR and no problems with any of them. Next one on Monday.

tinlid profile image
tinlid in reply toBcol

Your reply reinforces my decision to go ahead next week and be vaccinated. Thank you.

Greenthought profile image
Greenthought

My PMR journey started after my second vaccination for Covid, but I considered all the evidence (as PRM Pro does above) and have decided to have all the boosters since, as getting Covid at 75+ could be much worse. None of them has caused further problems, not even a flare. In fact, 3 years in, I'm now pretty much symptom-free. Good luck and hope it goes well.

tinlid profile image
tinlid in reply toGreenthought

So pleased you are doing so well. I am struggling a bit as although I have been seen at the hospital and GP nobody told me about flare ups or anything much about the disease so my ignorance is astonishing. Thank you for your help.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply totinlid

Maybe have a look at this for general info on both PMR and GCA -

healthunlocked.com/pmrgcauk...

And then more info here about PMR-

healthunlocked.com/pmrgcauk...

tinlid profile image
tinlid in reply toDorsetLady

Thank you I will do that.

Rugger profile image
Rugger in reply totinlid

I've just read your 'Bio' and you say you've been advised to drop your dose by 1mg / week. Does this mean that your doctors intend you to be off pred in 15 weeks? If so, this is far faster than anything in the guidelines! Perhaps you meant to write 1mg / month? (Which is still fairly rapid at the stage you're at. Many of us taper at 0.5mg / month, or longer and stay on each dose until we feel our body is ready to try a reduction.)

You say nobody told you about flare ups - that speed of tapering is a recipe for a flare!

Best wishes to you and stick with the Forum to learn as much as you can about PMR. 🌺

tinlid profile image
tinlid in reply toRugger

I did wonder but was told to avoid Google so just assumed I would be told everything if and when I needed to know! I am angry because now thanks to so many people on here I do know and I have not been doing the right things at all!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply totinlid

Yes maybe.. but we aren't a random Google site ..part of the PMRGCAuk charity and moderated by them, and full of members who know know a lot kore about PMT and GCA than some medical people...certainly living with t on a day to day basis.

tinlid profile image
tinlid in reply toDorsetLady

I wasn't for a moment implying this forum is anything to do with Google. I mentioned it only because the advice to avoid googling things discouraged me from looking for help online.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply totinlid

No I know that you weren’t implying that -but many doctors get very sniffy about it. But there are sites you can trust -and sites that I wouldn’t ! 😳

Rugger profile image
Rugger in reply totinlid

The charity has support groups throughout the UK. You may find there's one near you. Also, it has a Helpline, answered by volunteers with PMR &/or GCA.

You can join the charity for £15 / year. You'll receive 3 newsletters containing interesting articles and you'll be supporting the charity's aims of offering support to people like us, raising awareness of the 2 conditions and promoting research.

pmrgca.org.uk/get-support/g...

pmrgca.org.uk/get-support/h...

pmrgca.org.uk/how-to-help/b...

pmrgca.org.uk/newswires/ (to see some back issues)

I don't know what I would have done without finding the charity 8 years ago. I helped set up the local support group in Yorkshire as there was nothing in the county then!

PMR 2016

GCA-LVV 2019

Rugger profile image
Rugger in reply toRugger

PS and online support groups via Zoom, if there's nothing convenient locally.

pmrgca.org.uk/online-support/

PMRrunner profile image
PMRrunner

We all make different choices, mine is to have any COVID and flu vaccinations offered and the shingles vaccination when eligible. I've had COVID twice both times fairly mildly so I put that down to being vaccinated.

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