I’ve been invited for a COVID vax booster due to PMR/ Prednisolone. Anyone want to comment?
Covid vax? : I’ve been invited for a COVID vax... - PMRGCAuk
Covid vax?
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Oshmar
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I have had all mine and had no after effects other than an achey arm.
It is your decision whether you have it but I wouldn’t want to get Covid without having had the vaccination
Yes, I’ve always been vaxxed but feel strangely vulnerable about my body and it’s reactions at the moment. Thanks for the reply.
Hi just had covid for 3rd time and was 2 days away from vaccine. Worst I’ve felt for a long time and had to double my pred dose to 30mg for a week. Now 2 weeks since positive test and still not back to my normal.Will be getting vaccine as soon as I can - covid can be awful for people like us but I do understand your hesitancy as this is is all very new for you still.
Same here. I'm more concerned about contracting Covid than any possible side effects from vaccine.
DorsetLadyPMRGCAuk volunteer
As you’ve been invited - my advice would be to accept, unless you have had significant issues with previous boosters?
As you have no info on your bio , it’s difficult to give a measured response. But at the end of the day, it’s your decision.
However, there are concerns about the newest variant -
ukhsa.blog.gov.uk/2024/05/1...
Thank you… I hadn’t realised about my profile so I’ve just added a bit. Have PMR and taking pred 12.5mg currently. Coping but never feel ‘normal ‘ as you would imagine.
Okay thanks got that… and what do you mean by feeling yucky?
Even though you have an invite as you’re on 12.5mg and under 75 you may not get a vaccine. It does seem to be a bit hit and miss in some areas.
The yucky feeling is incredible fatigue and generally out of sorts. I assume that comes with the territory?
Unfortunately fatigue is part and parcel of any autoimmune illness - but it might indicate that 12.5mg is not quite enough.
Have you tried to carry on with life as before? Afraid that not possible, you do need to appreciate you have a serious systemic illness and adjust life accordingly,
Maybe have a look at through this -
healthunlocked.com/pmrgcauk...
Really helpful. The paragraph about fatigue being one of the hardest things to cope with hit the nail on the head. Impossible to carry on as before though. Wonder woman days are over!
Many of us have been there! 😂🤣
This is brilliant. Thank you so much
PMRproAmbassador
Is this the first booster since you developed PMR and started pred?
Yes… became unwell and diagnosed in January so I think that’s why I’m a bit nervous. Obviously also nervous about not having the booster and having Covid 😟
I already had PMR long before Covid and vaccines appeared on the scene. I have had all my jabs, I had a slight flare after the second one, mostly just an increase in fatigue rather than the muscle pain for a few weeks, and an increase in the atrial fibrillation which I have also had for years after the bivalent one 18 months ago. That is sorted and after the most recent jab in December I had nothing, not even a sore arm. I work on the assumption that whatever the vaccine might do, Covid could potentially be far worse and I don't want to risk it! So far I have not knowingly had Covid,
Thank you for taking the time to reply.
I've had all covid vaccines available to me in Nova Scotia, where nowadays they seem to be more generous in the age group eligible (65+) although I'm over 75 now anyway. Had a fairly strong reaction to a couple of Moderna, but no more than a day or two, nothing prolonged and no obvious effect on PMR. Pfizer were negligible, just the expected achy arm, and not always even that. My most recent vax was Novovax, and that too caused little reaction. Think I've had 8 altogether, only 2 Moderna, 1 Novovax and the rest Pfizer.
And since start of pandemic I've also had, with no ill effects, annual flu shot every fall, the 2-dose Shingrix series, and RSV last fall.
In the end it's a personal decision and vaccinations can/do effect different people in different ways. I've had all the Covid jabs, lost count of the number but it must be close to double figures, and the flu jabs with no discernable side effects. Even with all that, I still managed to get Covid but it was so mild it was hardly noticeable which I'm sure would not have been the case if I had not had the jabs.
I had my 8th on Monday, think that’s all of them…and like you, no issues [but then no GCA/Pred]. Plus a very mild case of the virus in March year.
I had mine on Monday and just have a sore arm, which isn't unusual for my post vaccines and I feel more sleepy and tired.
i have had all jabs while suffering with PMR (from 2019). No serious side effects...felt a bit achey after one for a few days...but nothing compared to how I might have felt if covid had come my way and I was unvaccinated.
i would do some research on it all.
I had my jab a week ago and I'm still not right. Hard to explain but I just feel poorly
Hi
I’ve had a booster about 6 weeks ago (Moderna) and was OK apart from a stiff / aching arm.
I did have a severe stomach upset following one of the earlier boosters but with hindsight that may have just been coincidental.
Previously I’d had covid and whilst I got off lightly and didn’t suffer badly with immediate symptoms - which I put down to the “protective” effects of the jab - I did feel the ensuing exhaustion / malaise dragged on far longer than I expected. I put that down to PMR!
I had mine two weeks ago and I haven’t had any after effects other than my arm ached for a couple of days. I’ve had all the boosters that have been offered and haven’t had any problems with them.
I was invited, booked the time and day, went to get it. Nurse checked the 'qualifiers list' and showed me that you have to be on a minimum of 20mgs daily to get it. After reading the drug information sheet and subsequent news articles I am glad I did not have it. Yesterday I got another message telling me to book it. Message deleted lol
Also, it's so important to be well aware of the possible side effects of the Covid injections. More information is coming out all the time and the total withdrawal of the Astra Zeneca vaccine has raised many questions in this hitherto pro-vaxxer's mind.
Hi, I'm still on a high dose of pred after 3 yrs, got pmr after my second pizerr jab , haven't had another jab since and never will also nurse said don't bother.
Your decision on whether to have booster is your choice of course, but not sure your nurse should be saying ‘don’t bother’…
However you do seem to be struggling with your PMR, and have relapsed a couple of times…to that end have you tried one of the slower tapering plans we recommend
healthunlocked.com/pmrgcauk...
.. or are you trying to live life as you did prior to your PMR and not managing what is a serious systemic illness. Have you looked at this [albeit that you’re not new] there may be some suggestion in there, particularly the pacing link, which may help -
healthunlocked.com/pmrgcauk...
Hi DorsetLady, yes I do taper slowly by 0.5 every 5 weeks and am in New territory at 11.5 never been this low before also just started gabapentin as rhumy thinks I have pmr as well as fibromalgier now ? Must admit I do try to live as I used to but am limited, stopped leflunomide didn't work no side effects tho .
Okay… actually I was going to ask if it was just PMR you were dealing with, sorry to hear you have Fibro as well.. and good to hear you are managing to get lower…
..hope the new med helps…and good luck.
Thankyou Dorsetlady 😊
Just had mine at the pharmacy. Currently on 6.5mg, but wasn’t asked for current dose: just said I’d been on steroids for almost 5 years, and had GCA … and the pharmacist was fine with it. Was all geared up to say “well, look at my records, your the ones who have filled all my scripts, and here’s my latest clinic letter etc”, but no need.
Personally, I’m still more worried about the long-term effects of repeated Covid infections, or a possible severe case of Covid, than the risks of a reaction to the vaccine.
comment from my friend who is a retired cardiologist - Covid can kill steroids will not!
Thank you for your reply, my post was about vax booster not steroids though?
My last booster was Modena vax. Had no issues with side effects from that or any of the other vaccines. PMR was stable and I was tapering slowly from 5mg. Within days I had symptoms of a full blown PMR flare and to cut a long story short, I’m back to square one. Had to start the whole PMR journey again and I’m currently at 10mg. It’s a set back of at least 18 months. I believe, and gp agrees, that the booster triggered the flare. My OH has a different auto immune condition and that had been stable for years, but was also triggered within days of the booster and I months on, it’s ongoing. Only you can decide and the infection risk is different for everyone. We’re isolated and don’t socialise so the risk of covid infection is relatively low so I’m not having any more boosters. Most have few issues, but for a minority it’s not straightforward.
Thats a really interesting post and the reason for my original query. Obviously, it’s my decision and of course I can do my research but people’s personal experience is invaluable. Thank you 🙏
I also flared after the vax but worse after a bout of Covid. For my autumn booster I won't be tapering in the month before or the month after the vax., FWIW.
PMRproAmbassador
Personally I wouldn't equate that with "steroids kill you". If so, you should also insist that car, motorcycles and other forms of transport have "danger of death" stickers.
DorsetLadyPMRGCAuk volunteer
Deaths of 7 patients were probably related to steroid treatment:
Seven probable out of 43, Not exactly compelling evidence though is it?
One article out of thousands
Yes but it’s one you linked, so replied to it…
I’m fully aware of the pros and cons of steroids, my mother was a passionate advocate of alternative medicine and won independent health shop retailer of the year, but my query was about people’s experience of boosters not about steroids.
That really is stretching it a bit.
I had mine with no qualms whatsoever.
I’m confused. Is your point that you believe I should avoid steroids or not have the booster?
it is a difficult personal decision. I had 3 Pfizer vax then for the 4th booster I decided to mix it and get Moderna hopefully increase my immunity. I later found out that Moderna had 3 times the active ingredient that Pfizer did. That was June 2022. Within 2 weeks I developed pain and stiffness and hips and knees which got progressively worse … after sitting or driving in a car for an hour I could barely walk. I have always been active hiking, gardening, walking, fitness classes.
By July I knew something was terribly wrong. My doctor started running tests and diagnosed PMR August 5. I have been on Prednisone ever since. It has taken me 22 months to get to 1.5 mg
I am absolutely certain that the Moderna booster triggered my PMR. No boosters for me. I don’t think my body could take it. To date, I have not had Covid. I am 66
Good luck - it’s a tough decision
Thank you for taking the time to reply. That’s a helpful, thoughtful post. 🙏
Interesting. gingerraspiller.... Your experience mirrors mine and I believe my PMR was triggered by the Pfizer booster. As has been mentioned, each to their own, but I will never again take any medication where the pharmaceutical company has previously been guaranteed no liability for possible side effects.
Totally agree , I was never against the boosters but I won't be having any more
You have to make your own decision on this one. I reacted to the vaccine (1st and 2nd jabs) by developing polymyalgia so no more for me. However, I think I had an early variation of covid the year before when the flu floored me and 2/3rds of the people where I worked as well. There was only one 'superspreader' who was a fountain of germs and only visited for the day.
It is likely that a covid vax triggered my PMR. Nevertheless I have since had a booster with no ill effects.
Although it seems forgotten Covid is still with us and is a nasty virus and potentially dangerous still. Long Covid is deeply unpleasant. As we are immune suppressed and many of us have achieved our Golden Age boosters make sense I think. I do wonder occasionally what I’m pumping into my body though! On the other hand didn’t think twice about protection against shingles having had it once!! 😀
I believe my PMR (which has pretty much resolved now after 3.5 years) was triggered by my second jab (Astra Zeneca), though it could just as well have been triggered by many other stressors, and I'm pretty sure I had Covid before the first UK lockdown. However I have had every booster offered since and have had no further problems other than a slightly sore arm and a bit of fatigue. My own research led me to conclude that the risks from Covid for someone my age (76) were higher for those unvaccinated. And booster immunity only lasts for a few months, apparently. I haven't had Covid since the first time. I also have the annual flu jab. All the best in reaching the right decision for you.
Thank you for your supportive comment 🙏
I received all Covid boosters as they became available. I was not diagnosed with giant cell arteritis when I received the boosters. However, after my Moderna booster in March, I began having symptoms which led to the ER in April with a 4 day hospital stay and a GCA diagnosis.
During my first rheumatologist visit, she said that Moderna has a higher percentage of mRNA which can trigger an autoimmune response. This rheumatologist believes more research is needed regarding vaccine safety for people with autoimmune disease. She further said she is not recommending Covid boosters for her autoimmune patients. I didn’t ask if she feels the Pfizer vaccine is, in her opinion, safer than Moderna.
It is a difficult decision as Covid without a booster can be a scary proposition too. I don’t know what I will doin the future regarding Covid boosters, but I wanted to share this you. Good luck!
weigh it up, covid jab or or no covid jab and being really ill with covid! I know which I prefer xx
I've had at least three boosters - no problems whatsoever here.
I think I am struggling with this issue. I had what seemed to be PMR 14 years ago out of the blue, Rheum put me on Pred and Hydroxychloroquine and within about a year I was completely back to normal. 13 years later at the time of my 4th Covid vaccine, I developed all the symptoms again. I cannot be sure the Biotech vaccine was the cause. I’ve been treated again with reducing Prednisone for last 15 months, had Covid vaccines ( about 2 or 3) with no ill effects. Since discontinuing Pred a month ago I have the stiffness/achiness of limbs, joints etc and am due for a blood test today. I suspect the CRP will be raised and presumably go back onto Pred. I will also then have the vaccine dilemma again. I feel as others have stated, it is probably better to have the vaccine than COVID but can’t help feeling this vaccine may have set it off again, or maybe co- incidental. I am new to this site. It is helpful to find a community who know and understand .
I completely understand. It’s a conundrum. Good luck with the decision 🤔
It is and thank you
Bad luck on getting PMR twice….but would say both treatment were very quick. Think you were lucky to get away with it first time around, but maybe it never fully went away, and maybe a series of vaccines in fairly quick succession reignited the second episode with again a very quick treatment plan.
You might find that a small dose of Pred gets it back under control this time, as you’ve only been off Pred for a month.. but if that’s what it is , I think a much slower taper would be sensible… or you may find yourself in same situation further down the line.
Did you have the latest 2 boosters when on Pred with no issues?
Although you’ve been there before, maybe have a read through this -
healthunlocked.com/pmrgcauk...
Thank you so much for your reply. You may be right about it never fully going away. and I agree the vaccines in quick succession may have triggered it again. I would be happier to think that I might get away with a smaller dose even if it takes longer to taper, so I will discuss this with my GP when my results come back. I did have the latest 2 boosters while on Pred with no issues at all. I will have a read of your article and I really appreciate your reply, it is helpful , it is good to hear from people who understand about this.
I suspect the PMR hasn't entirely gone away - or rather, the underlying autoimmune disorder is still active at a very low level. 1mg pred was plenty to manage it, zero pred is not. That is why we bang on about that last mg taking months with zero being the new dose and a VERY slow fade. It would probably resurface whatever you decided about any vaccination, not just Covid, There is nothing special about the Covid jab effect.
Thank you for your reply, yes. I’m now beginning to wonder if it ever went away entirely, I also agree that any vaccination might have re triggered it, it just happened to possibly be the covid vax. I am hoping that I can perhaps go back onto a low dose steroid and taper much more slowly. I had spoken to my GP before going to zero because as I gradually dropped some symptoms had returned but I thought I could cope so we decided I would try. Since going to zero the symptoms are much more ‘ full on’ to the degree that it affects my daily life to some extent,
At what dose did the symptoms reappear?
The trouble is, any leftover inflammation just builds up - in the same way a dripping tap will eventually fill a bucket unless you are scooping more out each day than the tap is leaking. That is the function of the pred. Once it isn't enough, you go back to the last dose that WAS enough, wait a bit and try again. Carefully.
You are never tapering relentlessly to zero - it is a process called titration which is used with several drugs to identify the lowest effective dose but with pred you do it top-down. You overshoot briefly - until the symptoms aren't quite managed - and go back. Just like you did at school in chemistry with titrations. But too many doctors seem have forgotten their basic science lessons!!
Truthfully I began to feel vague very small aches and mild stiffness from 7mg down, after each reduction I got used to it and it was less noticeable 2 weeks after until I got to 2mg when it didn’t ease and at 1mg I discussed with GP as I wondered if she would suggest alternating days, which she didn’t, so I thought I would try to discontinue and try strengthening exercises etc but it has really got worse now, after about 5 weeks without steroids. Even in my fingers which I don’t know whether is PMR or some arthritic thing. My neck, shoulders, hips and backs of my legs feel really affected so I am convinced that it is a flare up of PMR
The advice we would have given is , don’t continue to reduce when you have niggles as you did. Stay at each dose long enough to know it is controlling your PMR before you drop down. And TBH at 2mg you should have been proactive - and treated as a flare.
But that’s water under the bridge….unfortunately now you will have to start at a higher dose to get everything under control again. And under 5mg, only 0.5mg steps down and a slower tapering regime.
The old adage- a stitch in time save nine applies to PMR as well! 😊.
Hope you get back on track
So helpful to read this…. Not that I’m there yet 🙄
But always good to know beforehand, then no excuse to get it wrong 🤣🤣
Thank you again, I’ve learnt so much more since discovering this site only a couple of days ago. I think I could have saved myself a lot of trouble, I just felt that I’d been given the tapering regime and needed to stick to it and had the attitude that I should expect some niggles and carry on. I now realise from all your kind replies that I should not have. I should have been more pro active and assertive. When I saw the Rheumy 9 months after commencing treatment, she wasn’t totally convinced it was PMR because I was well controlled at that point, had only a little joint swelling on my fingers and she didn’t have the normal limits of the lab for my CRP which was 19 when I commenced prednisolone . However, all my symptoms had been as before ( 13 years ago) when I commenced treatment and again now and correlate with anything I’ve read on PMR. I’d even started to wonder if it was just age/osteoarthritis but with the sudden onset and symptoms etc I am convinced that it is not. I also read your article which is very enlightening. Thank you
Joint swelling is rarely a part of PMR and shouldn't be at all if the pred dose is enough to control all symptoms at the time. What on earth do these rheumies think they use pred for?
When you don’t know any better, then you follow what you are told hoping/thinking that the doctors know what’s right.. unfortunately they aren’t always…
Glad you’ve found us now.
That’s exactly it and I’m beginning to realise that might be the case. I am so glad too.
Well everyone’s PMR has its own quirks-they don’t always factor that in.. and life has a habit of throwing the odd spanner in the works as well.
If you had niggles at 2mg that worsened then you shouldn't have continued to reduce - those last few mg often take as long as a year to get through. If 2mg wasn't fully managing the PMR inflammation - then obviously less would be even worse.
You may still get away with a couple of weeks at 7mg and drop to 4mg and taper from there, very slowly, 1/2mg at a time. But when symptoms reappear - you have overshot. YOu aren't aiming for zero come what may, you are identifying the lowest effective dose. And from what you have said, if you are lucky that is 2.5mg still but no lower.
Thank you PMR pro, I certainly wish I’d found this site earlier. Your advice makes absolute sense to me. I think I’d been a bit ‘ hung ho’ about reducing the steroids to the letter! I just followed the given regime, I think partly because it had worked for me all those years ago, I assumed it would be the same again. Your advice ( along with other replies to my dilemma) is invaluable, I will certainly follow it.
Everyone I know who has had PMR twice says the same: every episode is different in some way - or ways.
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