Covid vaccination and onset of PMR: I am relatively... - PMRGCAuk

PMRGCAuk

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Covid vaccination and onset of PMR

bussell
bussell

I am relatively new to this site - and it has been oh so helpful to me over the last month.

Today I got my appointment for my second shot of the Pfizer vaccine for 27th Feb. Very pleased but a bit apprehensive! My background story is that I am 81, diagnosed some years ago with bronchiectasis and osteoporosis, but that has never stopped me from being very active - dog walking, pilates, gardening, travel, having fun with 8 grandchildren etc.

On 16th Dec 2020 I had my first vaccination. The following day I felt stiff and achy and a bit feverish. Thought nothing of it, but it went on and on and in fact was getting steadily worse. My GP was nonplussed but we both assumed it was an extra bad reaction to the vaccine. He sent me off for blood tests which showed raised CRP and ESR. However 6th Jan approached, the date for the second shot. I was feeling awful, could hardly move, phoned the GP who agreed I had better cancel it. He then prescribed 15mg pred for a week, just to see. Magic for 24 hours and then sheer murder. Another phone consultation, sent off to A and E to check for GCA. They thought not, which was a relief. So another phone call with my GP, increased dose of pred to 20mg and had a useful chat with him in which he casually mentioned he thought I'd probably be OK in 2 - 3 years. Knowing next to nothing about PMR this came as a bit of a shock!! Now I know better. Anyway I'm now on 17.5mg and doing well, get very tired though. And all of you keep me cheerful and well informed.

But I do wonder if the vaccine triggered something that was about to happen anyway. Thinking about it, I was a likely candidate. I already have an autoimmune condition (a form of alopecia) and my mother had PMR. My GP of course says it is just coincidence. But it's a mighty big one.

If you have managed to read this far, I would be so interested to hear any of your views.

15 Replies

Hi Bussel, sorry to hear you have had a flare. I would think it was an unfortunate coincidence and not related to the vaccine. Whatever it was that triggered it, PMR is now under control and you are now protected from contracting severe C-19 and hospitalisation.

bussell
bussell in reply to Heron82

No, perhaps I was not clear - it wasn't a flare. It was the onset. And it began literally within 12 hours of the vaccination. Prior to that no symptoms at all.

Yes I had covid in August I was in bed for a month, by September I'd been diagnosed with PMR i am only 59-year-old. I know covid affects the organ's & autoimmune system so im very weary too of the vaccine, not had my first dose yet!

Wow, i like you was a healthy 63 year old. Active no medications. I got the flu shot and within 7 days onset of PMR. 2 and 1/2 years later still have it. Coincidence????

PMRpro
PMRproAmbassador in reply to Duffer55

It isn't uncommon for people to develop symptoms after a flu shot - but it is less that the flu shot causes it and more that it was the final insult to an already stressed immune system and tipped it over the edge. If it hadn't been the jab it could well have been the flu you caught because you hadn't had the jab. Loads of us had never had a flu jab.

bussell
bussell in reply to PMRpro

If I have understood you correctly, what you say makes perfect sense to me - that you can be already over stressed and on the edge, so the flu vaccine/flu or covid vaccine/covid itself is the last straw that pushes you over into PMR. And you just develop PMR sooner than you might have done otherwise. A situation you just have to accept....

Duffer55
Duffer55 in reply to PMRpro

Yes you may be right with that but believe me my life in the previous 10 years was filled with more stress than you can imagine. Coincidence on the flu shot? We will never know. But just as they can’t pinpoint the cause Of PMR i am not discounting that it may have been a cause.

PMRpro
PMRproAmbassador in reply to Duffer55

That is the point I was making - there is rarely a single cause of PMR, other than possibly the form that results from statins or the old shingles vaccine but even then it could be said they are the final straw breaking the immune system's back. All that stress in the previous years will have had some effect on your immune system as well and something came along that finished it off - in your case, the flu shot. But if you hadn't had the flu shot, it might have been something else.

madhouse1
madhouse1 in reply to PMRpro

Would going on statins exacerbate PMR? GP has just said my cholesterol, sugar levels amd liver function results from a blood test are all high. Has given me metformin once a day. Wants me to go in statins and I’ve another blood test tomorrow.

MrsNails
MrsNails in reply to madhouse1

There was a Post on this in the last week, l’ll see if l can find I for you....

PMRpro
PMRproAmbassador in reply to madhouse1

It didn't exaccerbate the PMR symptoms for me - it introduced different and worse ones.

I had been in hospital because of severe atrial fibrillation caused by a reaction to i.v. diazepam - ironically being used to combat myofascial pain syndrome that had really floored me, I couldn't walk. I left hospital after 1 day on atorvastatin positively bouncing and feeling better PMR-wise than I had for a long time. Within 2 or 3 days I felt weak and wobbly which progressed quickly until about 10 days later I could barely get from the back gate of the hospital to the lifts- barely 50m but up a small slope - without gasping for breath. I was only on a half dose but I stopped it immediately and after a week or so started to feel better. I had asked the pain clinic doctor and she approved the experiment and later discussed it with the cardiologist who has put NO STATINS on my notes! There is no evidence they help a woman who has not yet had a cardiac event - different for men and for a woman after heart attack or stroke.

You can help the sugar levels and possibly the cholesterol by cutting carbs - it works for some for cholesterol, definitely works for sugar levels. Do you have the numbers? Is the HDL very high? Mine is - and obviously that increases the total but nt in a bad way.

What other medications are you on? Pred can raise liver enzymes but not usually excessively.

Most interesting! I have often "wondered" if my symptoms of PMR began following the Senior dosages of the flu vaccine I received. There really is no way to confirm as it is not possible to conduct any double-blind studies on individuals. That initial sense of having found a miracle drug, when treatment for PMR is begun, does taper off: and then begins the tapering down on dosage of prednisone.

Hi Bussell & Welcome 💐

Probably the final straw - as Pro says! No one really knows why it happens but l’m glad the Prednisolone is helping 🙏🏼

Take Good Care of Yourself & l hope you continue to improve. Any thoughts on the second vaccine?

Kind Regards

MrsN

bussell
bussell in reply to MrsNails

Second vaccination coming up on Saturday. Slightly apprehensive but of course I want to have it. After the repercussions of the first shot, how could the after effects possibly be worse??!! Will keep you posted....

MrsNails
MrsNails in reply to bussell

Good Luck 🍀

Take Care of yourself, rest afterwards & hopefully you’ll be fine 🙏🏼

Any questions please don’t hesitate to ask.

MrsN

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