covid booster - adverse reaction?

[Mandyq]

Hi - first of all a big thank you to all contributors and the admin on this site. The advice given has got me through some challenging times, particularly when I was first diagnosed with PMR about a year ago.

Initially I was prescribed 15 mg and this immediately eased the pain. I was then left to “get on with it” by my GP. Though after 6 months he did suggest I shouldn’t rush too quickly to reduce the dosage.

Based on suggestions on this site I’ve successfully reduced to 10mg and planned to continue reducing this week - going down to 9mg and then by 0.5 reductions every 4 -6 weeks (assuming I felt OK)

On Thursday I had my 5th covid jab (Pfizer) and by Friday evening I felt I’d been hit by a bus. Pain around the lower back area and the horrible of fatigue that all PMR sufferers will recognise.

So my questions are as follows:

Has anyone else had a similar experience following their covid booster or is this just an unhappy coincidence? Should I up my Pred to counteract this and if so for how long?

Thanks for your help - any advice gratefully received

Mandy Q

[piglette]

My last Covid jab from Pfizer nearly obliterated me!

[Mandyq in reply to piglette]

Hi Piglette, Thanks for the speedy reply, though I’m not sure I liked the answer😱 Did it take a few days for you to get back to “normal”

[piglette in reply to Mandyq]

My body does not seem to like medications and it also does not like giving blood! Until I got PMR I had never had anti biotics, pain killers, things for indigestion etc etc in fact I had not bought anything over the counter even. I reckon that is why my body reacts so badly. It is just a theory of mine so could be total rubbish!

[PMRpro Ambassador]

Any vaccine can poke at the underlying immune cause of PMR and some people experience it with the Covid vaccines. Many doctors recommend taking paracetamol just before and after the jab and that often calms any reaction to the vaccine down fairly well. I had a flare for about 6 weeks after my second jab right at the start, nothing with the PMR after any other jab. The bivalent one seems to have had quite a kick - a lot of people found it had effects on their heart if they alread had an arrythmia. It seems to vary a lot.

Try some paracetamol and see if it calms down over the holiday.

[Mandyq in reply to PMRpro]

Thank you for the prompt response - I’ve been lucky in that I’ve not suffered a flare since I was originally diagnosed, but while I’m not back to square one it does feel,like those early days. I’ve been fine with the other covid jabs and I’m reluctant to up the Pred so I’ll go for the Paracetamol approach and hope that and a few lazy days will sort things out.

[Miacaro45 in reply to PMRpro]

Anytime I have to go for a vaccine, I take 2 Tylenol about an hour afterwards and this helps tremendously.

[Mandyq in reply to Miacaro45]

I think that’s good advice - I’m on the paracetamols now and beginning to feel slightly better

[DorsetLady PMRGCAuk volunteer in reply to Mandyq]

With any vaccine for last 20 years I have always taken paracetamol on day before, day of vaccine and day after …advice from nurse.

Never had anything other than slight ache around vaccine site.

[Mandyq in reply to DorsetLady]

Thank you. This will definitely be my approach in future. Because I’d had no adverse reactions previously I was in a state of blissful ignorance.

Always lessons to be learned when living with PMR

[Koalajane]

I had my booster on Friday. I felt fine that day but the following day everything ached and I was so fatigued.

The following day, yesterday, I felt so much better, so hoping I am over it now

[Mandyq in reply to Koalajane]

That’s exactly how I felt. Day4 now and a slight improvement. Taking it easy and being supported by the family cat, her purring is very soporific!

[tempusfugi]

Hope you soon begin to feel better soon, Mandyq. As you say, a few easy days will be necessary for you this week. Let us know how things go please (I am in two minds about having the booster, though I've had all offered up to now). ❤️

[Mandyq in reply to tempusfugi]

thank you - I’ll provide an update on my progress - I was in 2 minds myself but decided to go for it as I’ve been unaffected previously. I wonder if it is just coincidence or maybe I was a bit run down anyway. Who knows.

[Pixix]

had Pfizer new one this week, had bad headache for 12 hours, then fine. Guess we are all different, hope you’re OK soon!

[Mandyq in reply to Pixix]

Thanks pixix, hope on the mend now.

[Koalajane in reply to Pixix]

I had the Pfizer BioNTech as well

[scats]

My last booster, last November, caused a full flare with all my initial symptoms. The next day I was unable to get out of bed and it needed an increase to 10mg to gain any relief.I had been on 6mg before and I still haven't been able to reach that again yet.

I have not had side effects from previous booster jabs, this time I had the one you had. Interestingly this was also the only jab to leave a bruise and I could feel the injection site until very recently.

By coincidence my son is currently working for Pfizer and said he was "contractually obliged" to report it to them. Their reply... What is PMR?

[Rozzyt in reply to scats]

That's because they have shunned any responsibility as have the government.

[Mandyq in reply to scats]

Thanks Scats - sorry to hear that you’ve not been able to reduce your medication.

Whilst I haven’t gone back to all my original symptoms ( which were frighteningly bad) I’ve definitely got some of the aches and most of the fatigue/ lethargy

I’m holding off upping the Pred in the hope that all this will pass, but I’m not sure how long to carry out with this approach! Fingers crossed for a good night sleep and feeling better tomorrow.

[oscarina]

responding with a question also- I awakened at 7am and had the immobilized shoulders , saddle area and stiff back of PMR two weeks to the day after my second vaccine jab. Started on Pred that afternoon and could get around well that evening, less stiff the next morning and less as I tapered over a year to the totally off pred, then the exhaustive fatigue set in that i never had before, have gotten the three other jabs and the fatigue is still as exhaustive. Cant say it was the vaccine, but timing seems too coincidental. Would like to get back on some pred, but doctor is against it firmly d/t SE she said. She is an excellent physician in all other respects, just not all that familiar with PMR and theres no insurance accepting rheumy in the vicinity. Question- how does acetaminophen help calm the immune response after a vaccine, i thought it was for pain and nsaids were the inflammation. Could use some info on this as nsaids are off the table d/t stomach SE and possible cardio SE. thanks

[PMRpro Ambassador in reply to oscarina]

This

rivm.nl/en/news/paracetamol....

suggests that paracetamol should not be taken BEFORE vaccination but is OK afterwards, This was not in the context of Covid vaccination though, It applies to all painkillers but how it exerts an effect I have no idea.

sydney.edu.au/news-opinion/...

is another more recent discussion

[Hidden]

I have always insisted to my doc that the covid vaccine set off my PMR 8 months ago and at my last visit he finally agreed possibility if the vaccine needle hits a small capillary during injection it’s possible for some of vaccine to get into blood stream where it can hide in organs (think mine is in bowels 😆 flare up first) and then flare up again. So I’ve decided no more vaccines. Hope you feel better soon this is a horrible condition xx

[PMRpro Ambassador in reply to Hidden]

Oh what tripe!!!! Got nothing to do with "getting into the blood stream" - has he no idea at all how a vaccine works in the body? The Covid vaccine can trigger the immune system to go haywire - just like the flu or shingles jabs or a range of other causes. How a vaccine works is part of the middle school GCSE biology course - and he is claiming to have studied medicine!!!!