I’d welcome any thoughts/advice please. Had covid booster, 4th, last Friday. Modena same as last year but under its new name, Spikway. Sore arm, very, very tired…done virtually nothing for last two and a half days. Yesterday and today all PMR pains very sore. Bilateral hips, shoulders, neck and biceps. Done nothing to trigger a flare so wondering if booster has triggered. I’m at 5mg, just managing and considering adding 5 for two or three days to see if it helps then dropping back. Fairly certain it’s all about to kick off again so not inclined to try to work through it. What do you reckon? Many thanks.
covid booster causing PMR flare?: I’d welcome any... - PMRGCAuk
covid booster causing PMR flare?
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Hulotsholiday
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DorsetLadyPMRGCAuk volunteer
Booster may well have triggered a flare, but that's the same with any vaccine, not just Covid one [Spikevax -guess spellcheck changed it 😏].
Usual advice for flare contained in this - and you may need more than 2 or 3 days -
healthunlocked.com/pmrgcauk...
Thanks DL. Spikvax..and I double checked ..was the upper case name on my card. Nurse misnamed. She actually said it’s Modena when I first enquired as to name before vax, then I saw something different written on my card and she said ‘oh, it’s the new name for the same vaccine’. Not strictly true, in fact, but why would a medic be hung up on detail🤣🤣
Details, details! … 🤦🏻♀️
Just change the name to confuse the innocent!
Drives me nuts. Such details may be critical for some and it’s unacceptable.
Yes, agree it is unacceptable….
Thanks DL. I’ve gone to bed so I’ve decided to take 10mg tomorrow for a week, then drop back to 5. If that doesn’t knock it, I’ll just have to face the alternative of going back up again and reducing more slowly. Fingers crossed 🤞
Hope it works for you…..and if needs be you can take it for a longer for a week…. but no longer than 2 ..or you will need to taper back to 5mg more slowly.
Ok, thank you. I’m as sure as I can be that it’s inflammation building. Not the first time but I’m not going to let it take hold. 👍
Doubled up this morning and feel much better. Within an hour pains were easier. Thank you.
Good…make sure you get it under control…before you reduce.
Pfizer definitely triggered something with me. I have never felt so ill. I was laid up for about two weeks.
Thanks; tbh, I can’t say I feel unwell after this, but certainly fatigue to almost unable to function at all and now the muscle pains. What a merrygoround.
If it is fatigue you can blame the deathly fatigue and the adrenals. A real party pooper!
I’m not getting a chance to rest so I don’t know what’s the real issue. OH has just had major bowel surgery to remove 80cm of inflamed intestine and a diagnosis of Crohns. Came out of nowhere 2 years ago at 66, so it’s been a haul back and forth for various oscopies etc. Today is one of those rare occasions where I’d happily walk away or just stand and scream. I’m sure tomorrow will be better.
You need to seek assistance - been there, done that during Covid and there was nothing. It came close to finishing me off.
Yes, I can understand that. No relatives, isolated location, few friends and none within a hundred miles and help isn’t forthcoming. I’ve been trying to find a cleaner for 6 months… just to vacuum or help bed change but even offering £20 an hour no one has even enquired. We need to move but with OH laid up for some time that’s tricky. Told GP I was struggling but it fell on stony ground. Tomorrow’s a new day.
Sorry you are struggling Hulotsholiday. I found my home help (who works for an agency) through the Social Prescriber who is attached to my GP surgery. It may be worth trying. All the best.
Thank you.
Just wondering if you’ve tried Age UK. Even if they can’t help they may be able to signpost you.
Golly - even I'd help at that! Can't do it on my own but I can help change a bed!! I only have a cleaner for an hour a week and she vacuums and does one other thing (I have a very small flat!) because I cannot use a vacuum without being flat out for days with back pain. I can just manage the bed if I have to but I dealt with that years ago by having 2 single foam mattresses on a 1.6m bed and single duvets.
Be firmer with the GP - tears if necessary. Covid made it impossible, someone came once a week to help him shower but there was nothing else - not even respite care as 700 care beds were closed because of no staff/Covid and all the home care people were dealing with the people who couldn't get into homes. It was awful. My daughters are in the NHS in the UK - long way away.
So sorry to hear what a rough time you are both having. My other is at present training to be on home Dialysis at Morriston Hospital (Swansea), he has a long journey looking forward to when the training is complete. I am about to be put on something for my Osteoporosis, I will inject myself every day, looking forward to a few monthe down the line for that as well, and having less pain. I hope that by next summer both yourself and OH will be feeling like new people! My very best wishes to you.
Thank you for your kind wishes. There’s always light at the end of a tunnel even if some days it’s a little dim. Today is better; I have less pain now I’ve doubled pred for a short stint. Best wishes to you both too.
PMRproAmbassador
Several people have reported a Covid vaccine triggering a shorter version of PMR and also triggering a flare. But let us be clear - ANY vaccine could trigger a flare and so can any serious illness so catching Covid not only leads to a risk of a PMR flare but also of developing Long Covid which is a darn sight worse than PMR as it has a far wider spectrum of symptoms.
It might be worth a bit more pred to see if it makes you feel any better but paracetamol might also do the trick and too much pred is likely to suppress the immune reaction to the vaccine.
Thanks. Interesting. I haven’t had any vaccine for years. No flu or shingles, only Covid and boosters. I lead a rather isolated lifestyle and haven’t had covid, for which I’m grateful.
I take cocodamol and Zapain daily for OA and the paracetamol element, same in both, hasn’t made any difference…which is why I think this is PMR flare and not just a general muscle pain. I’ll give it another few hours until tomorrow. Don’t want to suppress immune response to vaccine, but in balance, I’m no longer able to cope with another flare. After pushing 10 years, think I’m close to breaking point in trying to manage . Thank you
You are being careful not to overdose the paracetamol? Why are you using both since they are to all intents and purposes the same?
I've had PMR for nearly 20 years, 5 years undiagnosed and untreated,
Yes, thanks. They each have same paracetamol but different levels of codeine. I take 2 higher codeine, Zapain, each morning to get through day with OA pain. Then 2 cocodamol at night to get through night. So 4 tabs in total other than if OA is really bad and I increase the Zapain by a couple. It works ok for me without the constipation issues caused by Zapain alone. I need the slightly higher opiate to manage OA. It hits the pain but I don’t like the side effects. GP is happy to prescribe both knowing how I take each. The difference in codeine content, for me, makes a huge difference.
I was looking back and suddenly realised it’s a decade; a couple of years undiagnosed. A couple more years for rheumy referral with no treatment and then ‘treat as PMR’ diagnosis with steroids was a game changer. But it’s an ongoing journey, and tricky, as you know.
I do!
I didn’t have vaccination for Covid this time round because of the way it affected me on previous rounds
I have mine booked - despite the last one having woken up my atrial fibrillation. By then I will have had an ablation so we'll see what the jab doctors says in the pre-jab interview.
Interesting. I had a tachycardic episode yesterday evening. First for months. Heart rate went from 48 to 159 in an instant. Ice packs brought it down after about 30 mins.
Never found icepacks that helpful - where do you place them?
The a/f ramped up about 3 or 4 hours after the jab - not long that first evening but over the following couple of weeks it was more often and longer, most unusual for me. After a month or so it was almost every day and for hours. I should have made more fuss, might have had it sorted sooner! But it was never that high a heart rate, 120-130, and I kept thinking it would go away. Then I had to wait to see a cardiologist here and another wait for the referral. Should have turned up at the ED every other day ...
I ran both wrists under cold tap and stuck head under running cold water. I have actually stepped dressed into cold shower in the past. It seems to provide a shock that brings HR down. Then I sit with ice on inner wrists and back of neck for 5 or 10 minutes. Generally works, but I’m supposed to dial three nines if it continues for more than a few minutes. I waited 9 months for urgent cardiac referral and eventually saw consultant in August. He’s confirmed AF and I have to keep a record of the tachys for 6 months. First I’ve had since July. It just fills from 45/50 suddenly and for no apparent reason to three figures…highest was 169 and that lasted nearly 11 hours but self resolved.
I was diagnosed 10 years ago and when they found it was kept in until medicated. It was well managed on medication until Nov last year. The medication is only supposed to last 5 or 6 years so I did well. The new medication was brilliant for a few months but it hasn't been as good recently - I can't have a higher dose because I have a pacemaker. Don't need to record anything - the pacemaker does it for me!
GP thinks I need a pacemaker. Consultant won’t commit until next appt due Feb. Watch is recording the data but he wants a diary record of what I was doing immediately prior, how I felt etc etc. I took an ecg during the episode yesterday and it showed AF but sinus rhythm returned fairly quickly. If I’d opted three nines I think it would have been over before paras arrived , so a total waste of resources. It’s very unpredictable.
The pacemaker won't stop the a/f. I have one because the tachys in the a/f were being followed by bradys - where the heart rate fell dramatically and so did my BP making me dizzy and eventually I fainted and hit my head. Luckily I wasn't at the top of the stairs!!! A friend was and he fell and broke his neck - is now paralysed from the chest down. It MIGHT help in that they slow the heart rate down loads with medication but then you have to be sure it doesn't go too slow and a pacemaker sorts that risk out.
The only "cure" for a/f is an ablation and even then it can come back. I'm getting one in a few weeks. Here they now do them pretty much automatically at 60, don't do them at 80 and at 70 it depends on the patient. I now qualify as relatively healthy and living independently but 10 years ago they didn't do them unless they had to, things have moved on. The most important thing is the anticoagulation to reduce clots forming and heart attacks or strokes happening.
Thank you. It’s complicated isn’t it. I’m on the anticoagulants now ( thx to your earlier direction). I’m bradycardic but in the last 12 months resting hr is dropping very low at night. 32 is the lowest and it’s regularly around 35. I’ve had nearly 400 alerts since August, all after 11pm to say hr has dropped below 40. GP said she was OK if it stayed around 37 or 38 but I think the pacemaker idea is if it starts to consistently drop lower…and that’s beginning to happen. Just doing day to day stuff it’s rarely above 60, but these sudden spikes make me feel unwell. I hope your ablation goes well.
I was having pauses of 7 seconds! That's under 10 ...
That’s taking winding down to the extreme! Makes mine look vigorous.
Doesn't it ... 
I do think that at the end of the day a strong reaction to the Covid vaccine might well indicate how seriously ill we could be without the vaccine. Lives are saved.
Absolutely.
I had Moderna this time, and flu at the same time (other arm). Very slight bruised feeling in Covid arm, nothing in flu arm, no symptoms, no reaction - but I've not reacted to any of my jabs. Hubby was really ill after his last jab, he has no major health issues otherwise, but it was worse than covid; he had to have a week off work. We all react differently. My in-laws in their 80s take a week or two to get over any jabs.
Cheer yourself up and watch the film of your name! I saw it last week for the first time. It really is very good and laugh-out-loud funny. Hope hubby recovers OK. By the way, I live in Cheshire near Wirral and i have to pay £60 for a cleaner for 1 and a half hours.
FORTY quid an hour? Dear lord - I'd be living in filth! My daughter pays a lot for her hour I think - but it is a team who arrive with all the gear to get it done!
My home help works for an agency, I pay the agency £22 an hour. I don’t know how much of that goes to my home help.
But at least you have one! Mine asks for £15 cash in hand - she does other jobs including the shop downstairs so it is up to her to declare what she earns. My GP told me she wanted to get some clerical assistance in the practice, just a few hours a week, until she discovered what it would cost her in overheads! They are facing a shortage of GPs here - like everywhere - so it would behove them to sort out a better set-up to relieve single-handed practices.
Yes I know I’m very fortunate.
Things that appear straightforward often aren’t, so frustrating. 🥴
Well you probably live in/near the “footy” lot who have more money than sense…🤣😂
What I was thinking ...
Me too. 💷
Actually no, they're more over Alderley Edge area. We're on the Wirral border, only 4 miles from Birkenhead...
There’s quite a few in Caldy. And one in Melos.
Who, footballers? We did have one in this village, but he gutted the house then left. I don't know his name.
Yes footballers and Houlier, the former Lpool manager lived there. His wife played golf at the Royal Lpool in W Kirby and local gossip ‘knew’ he was leaving as she didn’t renew her membership!
Well Caldy is very upmarket! We're near Neston. My next door neighbour is the secretary at the Royal Liverpool Golf Club.
Or the cleaners have upmarket expectations ...
Sure they do…
I love HH. It’s a classic. Doubled up on pred this am and much more comfortable.
Oh good. Try to relax...
I had a similar experience. Initial vax no issies, first booster; felt unwell andsome what distressing, 2nd booster ( felt eveven worse ,6 weeks to recover. It was at the time Covid 19 just started and I was working in healthcare / direct pt care. It was an unsettled period,but has had an impact on my decision making w/ vacines. Even managed to contract shingles having had those vaccines. I was educated that it could have worse. Just caught me off guard initially, thought i was having a new and different kind of crazy ;-). Nope.. just another lesson in my physiology... Be well. Sincerely Jeff
I'm fairly sure my last Covid vaccine triggered my PMR. I also started with sore muscles in the arm where I had the shot, that never seemed to go away. I didn't pay much attention to it until I also started getting pain in my thighs and both upper arms, hips and shoulders. My doctor couldn't say one way or another if the Covid booster was the cause of my PMR, but indicated that it wasn't outside the realm of possibility. Because the disease, and the vaccine, are still relatively new, he said it will take about five years for science to figure out if there's any connection. I've always had flu vaccines, every year, and never had a reaction to them...but I have had six Covid vaccines since they first became available, and the bivalent one seemed to be the one that kicked off my PMR. Having said that, I was also going through a very stressful period at the time, so that may also have played a part. Anyhow, I'm not having any more vaccines for a while because I'm afraid of a flare, and still haven't been able to taper down my prednisone below 15 mg a day.
"Because the disease, and the vaccine, are still relatively new, he said it will take about five years for science to figure out if there's any connection"
He wants to keep up - they are already acknowledging the Covid vaccines appear to trigger PMR but it is hardly surprising since vaccines of other sorts can trigger PMR along with a whole load of other factors. Whatever is associated with the final appearance of PMR is a final straw onto an already stressed immune system. They also feel that the variety triggered by the vaccine is generally a relatively short-lived version and that certainly has seemed the case with some of the cases who have been on the forum.
That's interesting to know. I really hope my case is short-lived, although so far it's been five months and counting. Around the time my symptoms began, we were also under regular air quality warnings due to wildfire smoke so I can't help wondering if breathing smoky air further stressed my immune system on top of the vaccine, and the overwhelming worry about the fires themselves.
All possibilities
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