Thoughts on whether or not to vaccinate for covid please ? Any relevant data out there ? My last jab was October 2023 , I got covid in December. Given I got it anyway I thought no more vaccinations. That was pre PMR/possibly GCA diagnosis in Feb .As always, differing opinions on this . I’m not convinced it’s a good idea to introduce yet another thing into my body that’s having to cope with the effects of pred. I’m currently on 17 1/2 , reducing to 15 next week. I’m very susceptible to colds and sore throats , have one now 🙄would really appreciate sound thinking . Also , whilst on the subject , I’m seeing ads for shingles vaccinations ? Thank you
Covid vaccine or not ?: Thoughts on whether or not... - PMRGCAuk
Covid vaccine or not ?
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Pastamama
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I know how you feel. I think I have had Covid twice and about 7 Covid vaccines. The only consolation about the vaccine is that Covid tends to be shorter and milder than it would be without. Having said that my last bout caught on a long haul flight was pretty bad, back in January and to be honest, I haven’t felt well since, awful fatigue and flu type feelings. On balance I think I’ll have the vaccine but it’s a tough call.
Thank you for responding , thinking I should discuss with my rheumatologist. Guess the other quandary is which vaccine is available . Appreciate your thoughts .
As far as I know, vaccines actually do help keep an infection from becoming severe, but perhaps even more importantly research is showing that the after effects of an infection, aka long covid, are less severe and not as long lasting.
Of course there are other ways to lower risk of infection or reinfection in the first place, Last year I got through a summer full of dental appointments, nearly all of which occurred after masking in medical settings was dropped in my area. I masked when work not actually being done. I used an antiviral nasal spray (iota-carrageenan) and a CPC mouthwash. Eventually I got personal air purifier (HEPA filter) and now use that in many settings where exposure potential is high. Although I also avoid high risk environments as much as possible (e.g restaurants).
Shingles vaccination: I had the two-dose Shingrix series. Reacted very strongly, all better after a day each time. And afterwards found that my taper from a PMR flare which had not been going well started to be easier, actually doable, although I still went very slowly. The older vaccine, Zostavax, is a live vaccine and therefore has never been recommended for the immune-compromised, and in any case is not as effective nor as long-lasting as Shingrix.
This is a subject that is/has been discussed regularly on the forum and now you have posted you will be able to see/read all the previous associated posts.
Personally I would not have any more Covid vaccinations. Have read a lot of research on the benefits and otherwise and firmly believe that the problems associated with them are not worth the risk. Whether or not PMR will be another factor, I don’t really know. Not much help I know but look into it at Global Research.
There is some thinking that because the vaccine boosts the immune system it prolongs the PMR/GCA. I haven’t had one since last April because that thinking seems logical to me.
Have you a link to back that up? The vaccine "boosts" the immune system to recognise Covid - the underlying cause of PMR/GCA is a deranged immune system. It is equally possible that it could reset the immune system. No-one knows.
He advised me not to take it any more. I realise it’s not proven.
Fair enough - I just fancied reading it if there were. But I imagine it wouldn't just apply to PMR - but any autoimmune disorder. I'd also wonder if it can work the other way too - such a massive kick resetting the immune system. You could say that Covid itself or any other viral disease "boosted" the immune system to create an immune response. Or ANY vaccine come to that.
Just been having a wade through a few papers on the subject. Seems a bit of the "damned if you do, damned if you don't" still! If you have an a/i disorder you are more susceptible to trouble with Covid so it makes sense to have the vaccine but that too can cause problems ...
DorsetLadyPMRGCAuk volunteer
Your choice obviously-but have you been invited?
You won’t get it on age grounds, and may not if you are below 20mg Pred.. depends on how rigidly your local vaccination hub staff follow the criteria in the green book.
Pfizer and Moderna are the vaccines on offer, but it depends what one is available in your area.
There are some concerns about new variant-
ukhsa.blog.gov.uk/2024/05/1...
Re shingles - you should be contacted by your surgery when you are eligible for one.
I react badly to those so last October I had Sanofi (unsure of spelling)..it was much kinder to me so definitely will be asking for that again.
Okay..
Thank you all for your thoughts and information.
Covid vaccination is up to you I have had them all. No problems with any.
Shingles is a funny one. I had mine when I reached 70 the 2 dose one but my husband can’t get his until he is 70, he is 68. As people get to 65 they are offered them but those in between like yourself and my husband have to wait until they get to 70.
PMRproAmbassador
The vaccine doesn't stop you catching it - it makes it far less serious if you do. If you don't have the vaccine, you level of immunity that helps you fight it off will wan over time. The vaccine prepares your body to fight the virus off whichever variant you meet in the future. Catching the virus only prepares your body for that single variant. And as HeronNS mentions, having the vaccine reduces the risk that you will develop Long Covid - which is probably worse than the Covid infection itself.
I think the issues about Covid have been covered above - also see porridgeandgrapes post earlier.
Certainly, I would strongly urge anyone to get the shingles vaccination as soon as possible. See nhs.uk/vaccinations/shingle... for information. Those of us on prednisolone are given the Shingrix vaccine. I have a friend who had shingles almost 3 years ago and is still suffering the pain of postherpetic neuralgia. For him, it has been really grim and, I would say, more life-changing that my experience of PMR.
I think the issues about Covid have been covered above
Ad infinitum over the last few years…. 😊
Ad nauseum if you ask me!!!
I do wish we could add a laughing emoji as a quick response sometimes! 🤣🤣🤣
You can - DL often does to me ...
Wouldn’t be without it….😂
Nothing stopping you…. but maybe you have to ‘know’ the person you are replying to!
I had Covid very badly December 2020. Spent 11 days in critical care. Before I had Covid I’d decided not to have the vaccine. I have always been very healthy. After Covid I had the vaccine. In my opposite it was a huge mistake and I wish I’d never had it. Since then I’ve had to have a hip replacement last December then my other hip totally collapsed a few weeks ago and I’m due to have another hip replacement in 2 weeks time and this time the pain is ten fold!! I also have developed arthritis in my knees and have also developed PMR. My health has never ever been as bad. Like I said I’ve gone from healthy active person to someone who is crippled with pain. And yes I do blame it on the vaccine so I would 100% say never have it it has ruined my life.
If anything caused your health issues, then more likely to be the Covid itself [especially as you were so ill] rather than the vaccine…
The more usual cause of hip collapse is osteoarthritis - and the vaccine is highly unlikely to have caused that, You can also hardly say it was the vaccine rather than the fact you had also had Covid - since you had had both. And you couldn't have had a vaccine earlier - they weren't available.
I had NONE of the health issues I’ve described until AFTER I had the vaccine!! I suggested to my Dr that I felt either the vaccine or Covid itself brought on or magnified these issues. My Drs reply was “I feel you could be right” I am well aware of what has caused my hip to collapse I.e osteoarthritis I’m not stupid! I DO however feel these health issues have either been caused by Covid/vaccine or made considerably worse. Like I’ve said I am a completely different person since health wise but also having to take Pred has also contributed to my osteoarthritis.
Personally I would lay all blame on Covid itself for most of your health conditions. Obviously your bone health could be an age related coincidence. I’m sorry you’re suffering this badly with Arthritis. The vaccine may very well have caused the predisposed PMR .
I’m not having another mRNA vaccine, I’ve booked to have Noravax , still unsure if I’ll have that or not .
I would go as far as to say Covid itself is the main culprit.
From managing PMR with a purpose to slowly getting better, i haven’t been the same since also catching Covid in December 2020. It is a vascular affecting virus, attacking many organs other than the lungs .
How on earth I was caring for 2 unwell family members and my grandson on 2mg Pred pre 2020 , I can’t imagine.
With each infection I’ve had to increase Pred and start again, i can’t get below 7.5 mg . I’ve resorted to dropping 0.5mg every Friday for a month, that’s how I’m trying to decrease . Spending Friday’s and Saturday’s lying on the sofa sleeping.
Suffering weird stomach issues, exhaustion, low mood, have developed Lichen sclerosis and more PMR pain than I’ve had for years.
Those who just get a cold and continue spreading it around, may regret their blasé actions in years to come. I believe it stays in the body decimating our immune systems.
In the meantime we have to continue living in a world with governments who don’t care, don’t bother testing, medics who don’t mask , selfish people and try and make the best of our time on this earth.
The current strain is similar to the original. Not pleasant from what I’ve read. It still doesn’t send me rushing to get Moderna .
I was able to have Novavax this spring and had no reaction other than aware that something had been injected into my arm - which was a) more than I'd had from all but my first Pfizer, and b) much less than the two Moderna. I will avoid Moderna from now on although word is it's closer to Pfizer in strength now, it used to be stronger. My daughter, who was working for Public Health during the first year of the pandemic said Pfizer was made just strong enough to be effective, and Moderna just weak enough to be safe.
Thank you Heron , i might take the chance with Noravax .
It’s good to hear views from your daughter’s perspective.
I was ill with all of the Vaccines but the one and only Moderna I had, was an extremely unpleasant experience. I don’t think my body likes them , but it liked Covid less.
I felt quite ill after a second Moderna, and it ws only after the second one that I figured out it might have triggered some heart symptoms. Investigations have found I do have issues, but it was when I had Moderna that symptoms became concerning enough to mention to one of my sons and he told me to tell doctor. I still have the occaasional little "spell" but not nearly like two summers ago. Referral to cardiologist has not yet transpired, and now I think it might be waste of their time. 🤷♀️
We don’t know what these Vaccines do to our hearts or any vital organs.
My heart was under duress with Covid, the hospital tested bloods from the artery in my wrist to rule out clots .
Moderna certainly seems to cause issues for some. I don’t understand why they’re focusing on Astra Zeneca as the main culprit? There will be reasons .
I am glad your heart episodes are less Heron and hope you manage to get an MOT soon .
Take care
A-Z was never much available here, really only used for a limited age range to allow adults younger than the priority aged to get vaccinated a month or two earlier because of somewhat limited supplies of Pfizer at the time. My d-i-l had it, being close to 50 at the time, but since then has complained more that it was Moderna that affected her badly. Otoh, looking at her age, there's no reason to blame vax for any of the pre-covid infection symptoms she complained of 
! Plus she already had some pre-existing health issues. On balance she almost certainly has been better off with the vaccines than she would have been without them.
With her pe existing conditions she probably would need them , remember when I had Covid in 2020 the doctors were holding on for Astra Zeneca probably because it was developed in a more traditional mode of vaccine. Son in law was very unwell when he had AZ .
I am still torn , I think this virus changes so rapidly it’s difficult to cover it . They’re having a bad time in the Southern hemisphere , we’re also going through a wave. It’s like a continuous high wave now. My gut instinct is no .
I’m aching and exhausted today, you wonder is it this again or PMR . The starting symptoms are so similar.
Paramedics took my brother to the ED , I was worrying about Covid, they said it’s everywhere.
Lovely guys , nevertheless no masking in hospital whatsoever.
9 hours of hell as he was in pain and agitated, we didn’t even see a doctor but one of these new PA’s . Cellulitis and Bursitis in his elbows, from getting around on his derrière, doubled the dose of antibiotics .
I look at him and realise I have no rights to complain.
Take care Heron .
I had Covid Moderna vaccine and it elevated my CPR reading to 76 higher than it was at the start of treatment for GCA. I mentioned to Rheumy and they didn’t react by increasing my prednisolone but waited and 3weeks later my CPR reading back to a normal 3.
Inflammation markers can be raised by many different things… they aren’t specific to PMR /GCA…
I don’t regret having the COVID vaccine , just saying the elevated markers were as a result of the vaccine in the Rheumatologist’s opinion as had 36 hours before blood test and significant rise in CPR but no other symptoms of illness apart from general tiredness, which went after a couple of weeks
I wasn’t implying you regretted having covid vaccine, just stating that inflammation markers can be raised by many things… so it was probably due to your body’s natural reaction to the vaccine rather than your GCA…
Thank you I thought so too. Thank you for the links soooo helpful and reassuring. I think I will plan to do the holiday to Sicily at the beginning of October it will be 7months since diagnosis….my GP apparently no longer gives an opinion as to wether I should or shouldn’t go nor does the practice issue medical certificate in the event of cancelling. 🤷♀️
GPs seem to be coming more redundant by the day! 😳
My info is you should not take if you have a cold or any respiratory flu symptoms..and then you must decide for yourself..since you have already had several and still got covid...try to strenghten your immune system first with food and suppliments...this is only my opinion of course and not medical advice.
You generally shouldn't have a vaccine done WHILE you are unwell - but once you have recovered there is no reason why not too.
I did more or less say the same thing...and agree that the vaccine should not be taken while a person is unwell.
Interesting, I had my 8th Covid booster on 1st May along with my wife, her reaction was painful arm for the first time. Mine (PMR 10+ years) was immediate effect, afternoon evening feeling off, bad night temp and awoke feeling awful, spent the day in a chair. Following day OK great, until arthritis, type reaction in hands, swelling and odd pains elsewhere, eventually went to the Doctor, he thought it had triggered the Autoimmune system to react, may take a couple of months to settle. Increased Pred to 7 from 4.5, slowly improving.
My brother-in-law had it on the same day after a change of blood pressure tablets the week before. Suffered increased blood pressure, (190) went to A&E heart specialist put him back on old tablets. Commented that since the new covid booster Spikevax he'd noticed a sudden increase of Atrial Fibrillation cases.
I wouldn't go without the Shingle Vax, vital. As for the next Covid booster I'd still keep going for it. Too much at risk I feel.
I had had a/fib for years, pretty well controlled and very sporadic short episodes until I had the bivalent jab 18 months ago, Nov '22. Three hours later the a/f started and the episode lasted about 3 or 4 hours. After that I had an episode pretty much every day and getting longer and longer until they were about 12 hours long. No-one seemed willing to take me seriously and getting an appointment with MY cardiologist took a couple of months when she referred me immediately for an ablation. I saw the electrophysiologist at the end of April. He was perfectly agreeable to an ablation (although he wouldn't have the link to the vaccine) 3-4 months waiting list. The appointment eventually came for December - coinciding with the one and only strike day for doctors here, it was rescheduled for January and has been a great success. Just as well as I wouldn't have wanted much longer with the a/f, I could do so little.
But when I had the booster in December - nothing, barely a sore arm.
In October, 2023, I had the current Covid jab. Four days post jab, I developed afib. Tons of tests, tons of drugs later, I am of the opinion that the jab prompted the afib. Conversations with cardiologists, rheumatologists and primary care doc indicate they have seen data to support possibility of Covid jab triggering afib. All the tests, cat, mri, etc., show I had no preexisting heart disease,, possible mild leaky valve. Seems after the cardio version procedure, I have had no further afib. No one is willing to state the fact, but I’m pretty convinced that my sensitivity to the last jab is the triggering cause.
What think you?
I think it can trigger arrythmias and yes, there is evidence - though mine was due to the bivalent one 18 months ago and this winter's version of vaccine used did nothing to make it worse after being improved with different medication. The electrophysiologist who did my ablation agreed. But I didn't really consider NOT having the last booster.
One of the members of my extended family had diabetes and high blood pressure. Her blood pressure was well controlled and she was living a healthy active lifestyle. Her husband not so well. He had COPD among other things, including PMR. He caught covid in a medical setting, she caught it from him. He eventually died, although writing had been on the wall for him long pre-covid. But her blood pressure skyrocketed and couldn't be brought under control again. A few months later she died from a stroke. Both of them had been vaccinated, although I'm not sure if they were able to get the boosters when they became available, they may have been infected more than once because they were being exposed via two school-aged grandsons. Their daughter, my d-i-l, appears to have a form of LC after testing + at least 3 times, and I sincerely hope she never has another bout.
My husband had covid in 2022, early omicron wave I guess. He has never been the same since, including worsening of pre-existing eye problems. Except for the delay caused by that covid infection he's had all recommended vaccines, as well as RSV and a new pneumonia vax, and none of the vaccines have caused him any problems.
Wow! You've had a lot of responses and differing opinions. You may have seen I asked a similar question a few weeks ago. I eventually decided to go for the vaccine mainly because of the Leflunomide making me more susceptible to infections.
The first night after the jab my arm really hurt and I had a splitting headache. Paracetamol seemed to work eventually and I then had about 48 hours of feeling extremely tired. Otherwise I'm fine and pleased with my decision. I don't tend to wear a mask (but don't go to many crowded inside places often) and am always very careful around anyone exhibiting symptoms of being unwell. So if I do get COVID hopefully it won't be too bad.
PMR is an auto immune defect which means you are more likely to catch nasty bugs. Deffo go for the COVID booster and the shingles jab, and flu when it comes out this autumn, unless you want to self isolate for ever. NB: Always discuss with the medics first and leave a gap between each jab.
Thanks again to all .
I’ve just had shingles vaccine….was convinced when one person had it on their face and scalp over a year ago still with nerve damage and another had it in her eye and was hospitalised! My daughter had shingles in her twenties and had lots of pain with it.
Some are getting Covid multiple times but it’s up to you. If you do get it it’s best to know and keep away from vulnerable people.
Fran_BensonPartner
I'm closing responses to this thread. We've asked previously for there to be no posts on covid vaccines. I know many people get anxious about whether they should or shoudn't continue to have the booster vaccines but how someone else has reacted to a vaccine is not an indicator of how another person will react. Typically these threads can often become discussions of conjecture and that's not helpful either. Hopefully some of the balanced responses here will be helpful but we really do advise you to discuss with your clinician if you have any specific concerns.
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