I'm booked to have my next booster vaccination tomorrow. Feeling anxious this time, as I now have PMR affecting my neck, shoulders and arms. Would be grateful if anyone who has had the vaccine injected into a muscle in the arm experienced any prolonged and/or serious side-effects post-vacccination with regard to having PMR. Thanks in anticipation.
Covid Vaccination : I'm booked to have my next... - PMRGCAuk
Covid Vaccination
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jsc50
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No side effects at all jsc50. I am due my 6th soon.
That's reassuring to know. Thanks so much.
No sude effects had my 6th vaccination 4weeks ago.on 5mg of predominantly at present tapering down from flare in last October 2022.
Excuse typo really should read before I send!
Prolonged - the 6 month life of the vaccine - but my PMR was virtually non-existent at the time of the jab, 4 mg. My CRP was on a roll at 46, which I didn't know at the time, possibly simply due to from my body's point of view the trauma of double cataract surgery. I do wonder if when the immune system is showing such sign of being twitched it's a good idea to tweak it more with the vaccine.
The Moderna vaccine was the worst thing apart from onset that has happened to me on my PMR trip. Swollen hands and wrists, weakness in the hands, pains in my legs that might be PMR, general misery. The PMR which as I said had been dozing was definitely jerked awake, but I never did work out exactly what was PMR and what the jab. It ended in a horrendous flare and then just all went away again, like a genie going back into a bottle! Previous AZ and Pfizer no problems.
Having had Pfeizer each time, I intend to have Pfeizer this time. Never had any side-effects, although this time I have PMR hence my concern. Nice to know that Pfeizer didn't present problems for you either or AZ although the later did affect some people badly. Thanks for clarifying this Mayadill. Best Wishes.
My experience is that AZ and Pfizer both were ok, but I blame my autoimmune disease on Moderna or a combination of Moderna and flu vaccines last autumn. I personally am not attending for my spring booster, and won’t have more vaccines until I am recovered and pretty well off steroids. Everyone has to make their own decision, but moderately heavy steroids also diminish the body’s response to the vaccine anyway.
You've raised some interesting points. I hope you'll get along OK while unvaccinated against Covid. I had Covid recently and being one of the 'vulnerable' had antiviral medication delivered by NHS courier. A 5-day course cured me in ten days; however, my husband didn't qualify for A.V's and was symptomatic for 6/52. Just had my 6th Pfizer jab this morning ...do far so good.
Hi jsc50,
It'll really be quite difficult to make a decision based on your replies because as time has elapsed we've all discovered on this forum that we've all reacted differently to each and every vaccination so far.
- some people have experienced PMR- unrelated side effects with some of their vaccinations but not all of them
- some people have developed a PMR 'flare' that they believe may be as a direct result of one of their vaccinations
- some people have experienced no side effects whatsoever
- some people have experienced some kind of side effect with every vaccination.
All of these differences will be influenced by everyone's individual lifestyle, 'health' circumstances and their own individual combinations of medication that they're taking. Unfortunately, there isn't really any conclusive way of knowing before your vaccination, just how you personally may (or may not) react.
Only you can decide whether to have the next booster. As individuals, it's all about the risk...... the risk of possibly triggering a relapse against the risk of catching covid and possibly becoming very poorly.
It's not an easy one I'm afraid!
Yes, of course what you have said is correct; however, I am hoping that the likelihood of my pmr symptoms being worsened post-vaccination is less in common. My health issues necessitate me having boosters, unfortunately.
Of course. I understand completely.
All of us with PMR are taking steroids and therefore in the same position where having the boosters are very important too.
Being immuno-compromised most definitely necessitates vaccinations..... but frequently, if treatment and recovery develops other complications then this can influence what would otherwise be a straightforward decision.
I had no problems with my first 5 vaccinations but my most recent one triggered a diagnosed and what had been a stable heart problem to become extremely troublesome again. My cardiologist was very clear from his knowledge of what he was witnessing in his clinic and hearing from other colleagues, that the vaccine was the cause.
I now have to weigh up the very real risk of becoming seriously ill with covid if I don't have the next booster or risking a more serious consequence with my heart if I do have it.
I'm just wondering why your PMR symptoms are still so evident in your arms, neck & shoulders.... it sounds like you're possibly not on a high enough dose of steroids?
I haven't read your bio, so forgive me if I haven't got the whole picture here. I'll take a look.
Hopefully everything will be straightforward for you though.
Just read your bio and now understand. You've been through quite a bit. Sending all good wishes .
What a horrid dilemma for you to have Kendrew. I too am faced with a similar scenario, with having to weigh up the pro's and con's of steroid therapy against those of a MEK inhibitor. My GP is prescribing analgesia to manage the pain and stiffness from PMR until a review is necessary, and a firm decision made about my secondary stage cancer therapy. I wish you all the best in making your decision.
Hi Kendrew, I’m confused about the term ‘immunocompromised’. There was a post the other day & the consensus seemed to be that under 10mg you aren’t immunocompromised, & no need to have the vaccine. I think PMR Pro said it’s 20mg in Italy, but no doubt she will correct me if I’m wrong. So, if the vaccines caused your heart problems, but you’re only on 4.5mg, then why would you have another one? Not just that…but why would you need one? I’m back on 5mg right now, but I was onky allowed the chance of a vaccine due to my other medical conditions. I’m 66, so not automatically allowed one. I realise lots of people are being automatically sent message inviting them to have one, but they come from an office where they have no idea that anybody is actually reducing pred, & harms back to Covid days. I’m very interested in the subject as I’ve stuck my neck out & we are travelling in 3 weeks time, first time in 4 years. I see some PMR patients are still shielding, & it worries me that people aren’t moving on, as we only have one life & it goes so fast! My husband has an enlarged heart & Afib but doesn’t have vaccines for those, just because of age and asthma & COPD.
Well said, I agree. Especially as Covid has changed into a milder disease now. Like a bad cold people say.
It has not changed to a milder disease - the fact it is now like a mild cold for many is because of the fact most people are vaccinated. That isn't the same thing. Non-vaccinated or patients with co-morbidities are still dying. In the UK alone, there are IRO 500 death per week which have Covid mentioned on the death certificate.
In March '23 both myselfand my husband contracted Covid. He not bring on the list of most vulnerable, did not receive anti viral meds. Myself having ovarian cancer, had a 5 day course of A.V.s delivered via NHS courier. Within ten days, I had recovered completely. My husband continued having symptoms for 6 weeks.
Hi Pixix,
It's true to say that lower doses of prednisolone pose less of a threat regarding the risk from other infections due to immuno-supression.
However, other factors come into play for some people, such as:-
- secondary health conditions
- combination of medications
- other unrelated chronic illnesses
Also, my understanding from several rheumatologists is that its not just the dose of steroids that determines the level of immuno-supression, but also the length of time you're taking them. Prednisolone can have a kind of cumulative effect and long term use may continue to suppress the immune system....all be it to a lesser degree.
It's good that people are 'moving on' from covid but for many people, covid infection is still a very real threat to their health & well being. Covid is still out there and new strains are emerging all the time, (just like the flu viruses) So far these new strains have not posed any more of a risk to us, yet.
I have a friend receiving chemotherapy & it's brutal on her immune system. If she were to catch covid she would become very sick and even potentially die. She is most definitely still shielding.
Likewise, there are still many PMR sufferers who are taking high doses of steroids for a variety of different reasons and therefore still feel exceptionally vulnerable. For them, shielding is the nearest they can get to guaranteeing their protection because everyone else is in the enviable position of not being vulnerable and therefore not continuing to wear a mask in a public place.
I'm not saying that's right or wrong, it just is the reality.
I agree. We had to shield for the last six winters, before & after the main Covid period. Nobody had heard of it the first few winters we had to do it! I have a friend who has multiple myeloma (which my brother had for four years before we lost him) & she is still shielding, but other friends have had breast cancer & lived in a Buble for six months, & that was before Covid! No, I was actually interested to see if you feel you are still immune compromised as you are on a lower dosage now, but I wasn’t meaning to pry into your medical conditions, I was just surprised that you were considering needing another, that’s all. You always write such well thought out & educated posts & comments, & it surprised me as I thought you would (happily) be off the immuno suppressed list! My doctor says you’re vulnerable if taking over 20mg, sensible between 10 & 20, but at no extra risk if under 10. And he’s one of the ‘good guys’! Again, sorry if it was too personal a question, I wasn’t meaning to pry!
Please don't worry.
I absolutely know you weren't prying...I think these discussions are important as they frequently address concerns others also have.
I learnt very quickly that many medical professionals frequently do not offer correct, current or accurate advice where steroids are concerned.
Steroids are designed to suppress the immune system in order to reduce inflammation, so I feel that whatever dose I'm taking I will experience some immuno-supression, all-be-it on a diminishing scale.
I know in my own situation that because other things are going on with me health wise, that my immune system is definitely not working at full capacity even though I'm only on 3½mgs now.
Apologies Kendrew for not answering your latter messages. Yes, I have had a tough past two years. Mine is a rare subtype, so more difficult to treat. Six months post-chemotherapy I was beginning to feel over the worst from that and ready to take the world on with both hands...then the diagnosis of PMR came, after unexplained onset of pain in my shoulders, neck and arms. A routine CT scan for my next oncology check up revealed a lesion in lung pleura. A biopsy and possibly surgery was being considered. Mentally, my GP agreed it was not in my best interest at that time to start me on Prednisolone. Hence why, at the moment I am managing the worst of PMR by taking it at bedtime and on waking. It does allow me 5-6 hours peaceful sleep although I know sooner rather than later I'll probably have to face what ever price I must pay to be relieved of painful symptoms of PMR. I worry about what I might be facing on further therapies for OC, but now also I am fearful of the side-effects of Cushingoid symptoms quite likely on doses above 7.5mg. Mood changes and how it could affect my relationship with our primary aged grandchildren, in particular and certainly with my husband who has been wonderfully supportive. Now though also worried about serious health matters of his own. Depression is another concern with/without suicidal tendencies. How might it affect me, as my OC progresses. My father suffered with clinical depression, so I have a family history... Physically, I am otherwise the same as beforehand. Cheerfully making light of my woes and desperately trying to not allow them to get me down. I power walk 3-4 x per week 3 miles. I still keep to the same housework routine I started at retirement, and have mostly the same amount of energy. My worst nightmares come from starting on a course of Prednisolone and what the consequences might be for me. Thank you Kendrew for listening.
Hi Kendrew. Of course everyone is completely different, as you say from one year to another depending on all sorts of things, there can't be a predictor here. I'm not actually eligible for spring booster so the question doesn't for the mo arise, but I shall add a burned child fears fire! Previously the traffic-lights were green, never gave a thought to getting vaccinated. Now, if I were offered another shot, the lights are amber and I'd want to at least talk about it with a doctor first.
That's where I'm at this time around. (Such a good way of describing how I feel about it!)
I definitely intend speaking to some medical professionals before making my final decision.
Received a lot of helpful opinions on here.
And then there was the mood stuff, dark depressed thoughts. In a line, the jab turned me from well and happy to unwell and unhappy, Never want to go there again, it was appalling, low-grade appalling but appalling all the same!
Thankfully, I've never had any issues with low mood.
I like you feel it damaged my heart.After I had COVID I was diagnosed with an enlarged heart.I thinking was vaccines.
I already suffered from ectopic beats. The vaccine triggered a much more intense & alarming episode and my cardiologist said he'd treated a significantly increased number of patients with either newly diagnosed heart arrhythmias or worsening arrhythmia conditions following the vaccine I'd had. Interesting!
I hope you're improving now.
ive never had a covid injection had it twice even when I was at my worse with pmr im 67 but eat well but still on 4.5 pred
Very wise words Kendrew. I think it is how you are as an individual and how you have reacted in the past. If you have never had a problem then you are probably wise to take the vaccine. Me? I have reacted (or so I think) to four out of five vaccines. I have decided to risk not having the sixth. 🤞
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I had a flare, mostly of the fatigue, after my second jab 2 years ago, SInce then, nothing affecting the PMR.
If you get shoulder/arm pain after the jab it is more likely to be poor injection technique.
Yes, that is often the reason for aching around the injection site. That I know to expect, which fortunately hasn't always happened afterwards. Based on what most of you have said, generally the result isn't much different with PMR in the background. Feeling more relaxed about it now. Thank you.
Not just aching - if it is in the wrong place it can result is severe effects
ncbi.nlm.nih.gov/pmc/articl...
I'm resting both arms , so as not to aggravate the muscles prior to.a jab. I have prescribed analgesia so hopefully that will suffice.
it is suggested post jab to move the affected arm to help distribution of the vaccine...there are some gentle movements here
shelteringarms.com/rehablog....
hope it helps
Having PMR, and not on Pred I am constantly exercising my arms to alllay stiffness. Just had jab; soo far so good.
the ones that made my arm ache were where the injection site was higher up the arm. Nearer the shoulder
just read that and that exactly what happened. The pain when the needle went in then when she released the serum it left me in shock. Only for a few minutes but has resulted in my upper arm being painful to move in certain directions. Went for scan this am so have to await results. Although when I say to the medics about the injection they just dismiss it. 😊
Want to do some reading then - I quoted this above
ncbi.nlm.nih.gov/pmc/articl...
I don't make things up - I read the same publications they could!
I was undecided about the latest booster but when the nurse came to boost my very elderly mother she offered to do mine too as i had the invite text to show her on my phone. I went ahead and took up the offer there and then. The worst side effect was her mentioning me being over 75. I'm 64. This is not to trivialise the decision making process. We all have a different set of circumstances to weigh up.
I had mine yesterday - Pfizer - so far no side effects other than a sore arm and a flushed face. Weirdly, with my previous ones my PMR pain actually lessened - I thought maybe because it gave my immune system something else on which to concentrate. 🤷🏻♀️ Either way I would rather have it than not. Hope all goes well with yours.
Hi, had my 7th vaccine 2 weeks ago (Pfizer) no side effects not even a sore arm.
Hi
I have known a lot of friends and family to have taken serious side effects
The decision has to be a personal one to weigh up the pros and cons
Best wishes
Hi , I had the Pfeizer Bivalent booster a week ago. The only side effect was a red patch which was sore for a couple of days. I took Paracetamol and it disappeared by day 3 or 4.
I've had the Pfizer booster and so far so good. 🤞
Thats good, look after yourself. x
You too. 🙂
My diagnosis of PMRGCA followed within a month of my first Covid injection, March ‘20. At each subsequent injection for Covid I have become ill with a ‘flare’, after being assured by medical staff that it was unlikely to cause issues. For the last two boosters I have chosen not to accept it as what I have suffered was certainly more than discomfort. I surmise each of us will react differently, a few worse than the majority, but it has become an individual’s choice and should be without the pressure of guilt. I have never suffered from Covid, and was relatively fit and healthy up to this pandemic.
had no problems with 1/2/3 Pfizer but 4/5/6 Moderna left me with a painful arm. 7 recent jab Pfizer and no problems .
Having scan on arm this am to see why painful to move. 😊
First vaccine triggered my PMR/ GCA. 2nd vaccine caused a flare. I continued to have them cos of risk of covid due to epilepsy. Then got covid anyway. Have now been advised not to have any more by epilepsy consultant since risk of side effects higher than risk of severe covid .....I wish you luck with difficult decision
I have had my spring booster which was the Pfizer BioNTech.I didn’t feel a thing and only noticed a sore arm when lying on it in bed. No after effects at all
Sorry no more vaccines for me. Its not the injection sore arm pain that stops me its the PMR causedbto me by this vaccine. Good luck !
If you have had Covid which I had 2 months ago that's the best vaccine you could have.
I also have PMR and have had the vaccines with no side effects at all,same 8njection experience as normal.Dont worry,you'll be fine.
I've had seven so far. None had any bad effects. I've also had Covid but again with no ill effects. Best wishes.
Hi,
I did not have any bad after effects in my arm with subsequent shots. The very first Moderna vaccine shot did give me some but I took Tylenol and slept it off, But nothing after that. I do have it in my left arm because it can cause a little bit of soreness which is natural. Also shake your arm out and try your best to relax it. Good luck!!
my immune system rejects them. That is primarily a cause of my PMR. When given Vaccination my immune system response is to attack my joints. I don’t hold immunity from any vaccinations. Including MMR given at least 6 times or whooping cough.
Don’t know whether to have mine! Looking back, my PMR troubles started within 2 weeks of second dose, a flare up after covid and the 3rd and another after last autumn’s booster. Coincidence? Or what?
Asked the neurosurgeon during a recent examination because of continuing numb fingers and toes (all in last 2 and a half years) about possible links to covid and/or vaccine and he said nothing can be said conclusively. It may be that the autoimmune system failure was triggered earlier than it might have been, but no certainty.
So, do I or do I not go for the booster? I DO NOT KNOW😩
Hi Vrissi, I am in a similar position to yourself, in that I'm uncertain about having the booster, though I've been ok after previous vaccinations. That said, and I can't prove anything of course, but I have a tendecy to think my PMR was started by the Covid vaccination.
I am interested in what you say about the neurosurgeon. I need to speak to/see someone about the pins and needles or tingling and now quite severe pain, which is keeping me awake at night, in my hands and arms. Am now beginning to dread going to bed because of this. My rheumie has really been no help, neither has my medical centre. Did you decide of your own accord to see a neurosurgeon? I say this because I don't know what to do about this or who to speak to about it. I just know I can't go on much longer without doing SOMETHING. Thank you in advance for any response.
My PMR started a couple of weeks after my first Pfizer Covid Vax, May 2021. It escalated after the second one (10 days after), in Aug. 2021. I did not know it was PMR a the time and was not diagnosed until Jan. 2022. In agony for the whole of the summer and fall. No coincidence me thinks. No more vax for this chicky.
Missus835 I'm the same, with you on that one. Covid vaccine started mine and also sent me into afib. I know too many people who have had heart problems since the vaccines
HI,
I had my Pfizer jab last night and arm is slightly sore this morning but no different to the last time. On 9mg at the moment
I'm not having any more at least until the autumn. The second booster triggered PMR in me, another sent me into the worst afib attack I have ever experienced. I know too many people who have developed heart conditions after the vaccines and several deaths in younger people. One colleague at work had a blood clot on her lung and she's only 22
Just had mine a week ago and just a sore upper arm for a couple days. I have had no problems so far with the vaccines. Good luck with everything.
I had my Covid vacc in April & was fine apart frim the usual stiff arm for 24 hrs
Thanks for your message; just been vaccinated..so far so good.
Well, the article certainly makes sense of the potential for shoulder pain post-vaccination. Thanks.
I and my rheumatologist feel that the Moderna vaccine triggered my PMR. So, I was advised to have NO more boosters, etc. A month after the second vaccine in the two- part series, I started having the classic pain of PMR.
Thank you for explaining your experience. I had to 'bite the bullet' so to speak because of my co-morbidity factors warranting it. I had the jab last week. The following morning on waking I did notice a faint throb above my left eye and on the side of my forehead. It was intermittent, lasting until the late afternoon and also aching in my neck. The injection site wasn't overly tender though. Otherwise, thankfully I didn't suffer much from having the vaccine. I wouldn't have had it, should I not have serious health issues. The symptoms I did have could also have been resulting from a high level of stress I'm under concerning forthcoming treatment for cancer. It is, as you have said, difficult to be precise on the origin.
yes I have long term effects. First 4 vaccine were fine. (Pfizer) No issues whatsoever. The 5th and 6th were very painful to have and I have SIRVA. (Moderna Spikevax). The 4th I blame the male nurse technique. He injected nearly at the top of my shoulder. The 6th I think was very painful becos of the damage by the 5th.
I have had a 7th jab a few weeks ago and again no side effects. Pfizer
Still think it is the best thing to do is to keep up with the jabs 😊
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