This is my first post on the forum so hope it goes ok. My question is concerning the booster jab for Covid and, the usual, flu vaccination.
This afternoon my local medical centre sent texts regarding the above, encouraging me to book dates for the vaccinations. I always have a flu jab and have had three Covid vaccinations, during 2021. Interestingly, I have avoided Covid thus far even though I shared a holiday cottage with two friends in July this year, who both contracted it while on holiday.
I was diagnosed with PMR in March 2022 and because 15mg of Pred had no effect, started on 25mg on 26 March. I am now on 9mg and will be for another 6 weeks or so before trying 8mg (not that I have much confidence that it will work, as I can feel the pain hovering to come back😢).
My point is should I go ahead with the Covid vaccination? This may sound silly because, at all costs, I want to avoid it, of course BUT I have read on the net that PMR sufferers either contracted PMR following their Covid vaccination or those who already had PMR had 'flare ups'. I think it's too new to prove any connection but it does worry me that a flare up is possible. I just don't want to go through that pain again😓
I think I'll probably risk the vaccination but am wondering if anyone else has similar thoughts or experiences. Have you heard anything along these lines? Most grateful for your comments.
Best to you all,
tempus fugi
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yes, all the thoughts and feelings but went ahead anyway. Covid would have a much worse effect. I tested positive today, if this is the mild version……..
Remember, people tend to post on here when things go wrong. It’s probably not statistically significant. Good luck!
Yes, I've had five and no reactions at all to any of them. We are all different so what goes for one doesn't necessarily go for another. I shall have my sixth and had intended to have it with my flu jab, but might have them separately now that I have read further down. I've been invited, but I want to wait a couple of weeks. Hoping to go away in late November for two weeks to Lanzarote (a holiday we have postponed four times because of the Covid pandemic) and would like to be covered for that. Hope I am making the right decision to hang on.
I'm waiting for mine here in Italy and I will have both, If you have had 3 jabs already what makes you think another would be any different?
Early figures suggest that yes, PMR can be triggered after a Covid jab but less often than after a flu jab. Many people associate their PMR with a flu or shingles jab - like many others I had had neither of them before PMR turned up. As SJ says - a nasty dose of Covid can do all sorts of things and the vaccine is also a protection against Long Covid which appears in many cases to be similar to PMRplus!
Thanks PMRpro. The difference with me having the 4th jab for Covid is that with the other 3, I didn't have PMR at the time. That's why I'm wondering what will happen this time. It seems like the flu jab is more likely to produce a flare up then. My Medical Centre are suggesting I book both at the same time, I think.
I appreciate what you say about a dose of Covid and Long Covid. Am pretty sure I will go for both vaccinations.
I think if it were me I would ask to have them on separate occasions. Even I wouldn't fancy both on the same day!!! Not sure what they will do here - and I also have the complication that I am on pred and tocilizumab!
PMRPro-I too have been wondering if I should get flu and Covid on same day….question:since you too are on tocilizumab, any plans of not taking injection after receiving shots?
In my case I was invited to book my 5th Covid Booster and the Flu jab on the same day but for different dates, Covid this coming Monday Flu 30th September that seems a sensible way to go as normally I would not have the Fly jab until late October.
If you have time and it is not too difficult, can you explain what PMRplus is, I believe I may have/have had long Covid but trying to get anyone interested into finding out is proving impossible.
Finally (for now) I read most of these forum posts and have noticed that a lot of people, including myself, were first diagnosed with PMR in March 2022 !!!! are you aware of any reason for this?
My term for PMR that doesn't just conform to the usual assessment of what PMR is - usually I suspect the PMR that manifests alongside GCA and LVV which happens far far more than most rheumies suspect or admit, mainly because they have never really looked. That is starting to happen now - one rheumy told a group I work with recently that he checks every PMR patients for evidence of LVV/GCA. High time.
I suppose you'd say that there is a lot of vasculitis involved - and we know Covid does give rise to vasculitis and that probably caused a lot of the symptoms.
hi all...my question is related...but...my concetn is getting the vax while on all this pred. When I asked my rheum doc she didn't really want me to...said wait until 10. Who knows when that will be. Anything on that? I have gotten sick each time I got the vax I assume related to my various autoimmune conditions (this was prior to PMR) I just dealt with it... but now...things are different.
It was established that most people with suppressed immune systems did develop a reaction to the vaccine by making their primary course 3 shots instead of only 2. Then they go on to have boosters - it caused a great deal of confusion in terminology at the time.
Had I had to wait until 10mg to get a Covid jab I'd only be getting one now - and I'm only on 10mg because I'm taking Actemra which is even more immunosuppressant and I'd need to stop it for a week or to I imagine
I have GCA and am on pred and TCZ.....I'm going to make my appointments today for the 5th vaccine and...as suggested...a few days later have the flu shot. I just know my body would have a rougher time with Covid than any reaction...so far I have had none. Hope it helps..💕
Yes, indeed, thanks Grammy80. Ooh! just realised that I think I know you from the monthly Zoom meetings! I think you're from the US? I was the person you couldn't see because my camera wasn't working a month or so ago😀 Nice to be in contact again!
Can I ask please how you were informed about your Covid booster. I haven’t heard a thing yet about mine. This next booster would be my 6th. I was shielding and classed as extremely vulnerable. Thank you.
I had a completely different experience. Had Pfizer for initial series, also first booster, and Moderna for second booster. I was already flaring badly when I had my first covid shot so I don't know if it had any effect on me as I already felt so bad. I had managed to get my dose down to 5 mg for the shot but went back up to 7 almost right away. Second shot not so bad, basically a non-event, as was first booster. I deliberately chose a different vax, Moderna, for second booster. Had quite a strong reaction, marked really by extreme fatigue, I could hardly move, came on quickly and lifted almost as fast about 24 hours later. And since then my PMR has really been behaving itself and I'm tapering to 2 mg. During the course of the year I also had regular flu shot (no reaction beyond the usual slightly achy arm) and a 2 dose Shingrix series, which I also reacted to with fatigue, and which seemed to kick start my until-then faltering taper into a more successful mode.
I would prefer the potential but rare risks of a covid booster over the certain risks a covid infection could cause.
Hello. Interesting that you all had flu and covid vaccination on different days. In the Netherlands there has been little or no coordination. The covid shot coming from the regional health authoreties, flu shot from GP's. Very recently saw my rheumatologist, I discussed the info I found through you lovely people from the British Society of Reumatologists (?) That a two weeks drug holliday from MTX was advisable after a covid vaccination. She said she could not comment, no instruction from the Dutch Rheumatologen Vereniging. But she did warn me about having these two, flu and covid, shots together. Always take between 10 or 14 days in between! That is what she said. For what's its worth.
I've had 3 jabs – x2 Astrazeneca and x1 Pfizer and reacted strongly to them all, especially the first one which sent me to bed for a few days. I 'only' had PMR at that stage. Currently due a fourth shot but after consulting with my GP, I have decided to defer whilst on higher doses of pred for GCA (22.5mg at the moment) as he says it's unlikely I would mount much of a defence to the vaccine just now. I figure it's not worth it for negligible benefit and I'm not too keen on getting a strong reaction again either. So I'm continuing to shield and stay away from other people as much as possible. I will probably have the fourth one at some stage, despite some personal reservations about the unknown long term effects of so many vaccinations over a relatively short period of time. Good luck with your decision making!
I feel exactly the same as you, had three vaccines, two AstraZeneca and one Phizer with mild reaction, in bed for a day recovering. I did have Covid in April this year and started steroid treatment for GCA in May. I am currently on 17.5 mg but do not want to risk reaction from vaccine. I will probably have it at a later date when steroids reduced.
It actually makes sense to wait until you're taking a lower dose of immune suppressing medication. That's why I struggled to get my pred down to 5 mg and had intended to stay on that dose for at least a week afterwards but found it too difficult. Thankfully that's not been a problem for some time so hopefully the other vaccines I've had have all "taken".
Hi I am one of those that felt I contracted PMG from my 3rd vaccination. But I had the 4th and no worse, so I will again get my 5th next week. It does concern me as I am not on a steroid having only just been diagnosed after suffering for 9 months. I’ve decided to not start the steroid just yet as it has reduced quite a bit, and I have so many other health issues I am scared to start them. I also have avoided Covid and I suppose I am more scared of that.
I personally have major underlying conditions, heart and cancer, so I’m not prepared to risk Covid.
My specialist say have the jab but it’s a hard decision, I will take paracetamol on the day and rest. Good luck
I have GCA and not, fingers crossed, PMR. I am having the vaccinations together as I'm on methotrexate and stop it for 2 weeks after vaccination. If I had them about 2 weeks apart I'd have to stop methotrexate for longer.
Like Yogiwendy I feel that my PMR came on after a Covid booster (2nd Astra Zeneca). Also like her, I am not on pred and am trying to manage without at the moment, but I do not have any other major health issues. I did have a third jab (Pfizer this time) with no after effects beyond a bit of fatigue. I think I will take a booster when one is offered, but will separate this from the flu jab by a week or so after reading other posts above. I am 74 and the danger of Covid itself still seems to me to outweigh the risk posed by vaccinations, though no doubt we will learn more as time progresses!
I was diagnosed with PMR/GCA in 2018 and had a flare in 2020. I have had four Covid jabs and am about to go for my fifth on Monday. Absolutely no problems at all other than a sore arm. I did however give myself a rest day afterwards and took paracetamol because someone said that was a good idea.
I have always taken paracetamol for 24hrs before vaccine -and 48 hours afterwards -never had an issue -even when on high doses of steroids with GCA. ..so might have been me.
Like you I have received a message from my local GP surgery extending an invitation to have a Covid booster. I have decided to decline any further Covid boosters at this time, after reading many articles pertaining to complications and possible early deaths resulting possibly from the Covid vaccines.
I am not a conspiracy theorist and believe my life is in my hands, to be able to make my own decisions regarding my life and my health.
I have been plugging away with PMR since November 2020, now down to 4mg and hoping to reduce further without more complications. Since being diagnosed with PMR I have experienced the usual aches and pains ,fatigue, low moods, tears, flares, etc... but most disturbing bouts of diverticulitis and episodes of heart palpitations.
I've had 3 Covid vaccines, 1st in Feb 2021, 2nd in May 2021 and third in Nov. 2021.
My bouts with diverticulitis started in June and another in July 2021 not long after the May 2021 Covid vaccine.
Recently, I have had another bout of diverticulitis and two episodes of a racing heart, (Tachycardia or heart palpitations).
Now I am wondering if there is any correlation with these medical issues and receiving Covid vaccines. Or do they have to do with PMR and/or a compromised immune system or all of these? Who knows? Anyway it is these questions that have prompted me to decline any further Covid vaccines at this time.
I am also contemplating as to whether or not have a flu jab this year.
I look forward to thoughts and comments from yourself and others on this wonderful informative forum.
It is in adversity that we all join together, that possibly gives us better understanding.
Keep smiling, laughing and enjoying; especially during challenging times.
I have atrial fibrillation - palpitations started about the same time as the PMR symptoms did and the cardiologist believes the electrical cells in the heart were damaged by the autoimmune part of PMR. The Covid jabs made no difference - I had a minor flare of PMR after one jab but I've had far worse since so it was more likely the same cause, stress with a sick husband.
I too am anxious about the next booster and the flu vaccine. I developed GCA and PMR shortly after I had my first ever flu vaccine. I have had a relapse after every Covid vaccine/booster and I am considering not taking either the next covid booster or the flu vaccine-- both being offered to me on the same day. I am on 7mg prednisone. 20mg Methotrexate. Still not 100% decided what to do....
i developed PMR within days of a flu shot in 2020. When I had my first Moderna, I reacted and flaired badly 5 days later This flair lasted 4 months. I have had no more covid shots. My PMR is stable on 7 mg. Because I have 3 autoimmune diseases and also myeloma, vaccines are quite likely not to work for me, so I have decided to behave as if unvaccinated. So far, so good. Good luck, Jane
I developed PMR 5 days after my first Astrazeneca Covid vaccine. I am sure that was the trigger.
That hasn't stopped me from having another AZ, a Pfizer and a Moderna. It does feel like playing Russian Roulette every time though and the last Moderna seemed to increase my PMR type pains.
I will take the autumn booster only if it is the 'improved' vaccine. I intend to leave at least 12 months vaccine free after that.
I don't think that I have ever had flu. Lots of colds but nothing that wiped me out. I don't intend to start having the flu vaccine now I realise what it could do to me.
Yesterday I got the bivalent COVID vaccine and the flu shot at the same time. One vaccine in each arm so to differentiate if there is a reaction in a particular arm. The flu vaccine arm is not sore unlike the COVID vaccine arm, which is definitely sore.
Currently, I'm tapering and am on 8 mg of prednisone for PMR and am not experiencing any flares thus far.
I have had 4 vaccinations...and flu last year, with no covid so far...I have now been sent for to have flu and another covid which I will.....I can`t believe just how much my poor little arm takes, so many in and many blood tests out!....and still more blood tests to come in two weeks!....
I want to repeat something others have mentioned on this point because it is very important, and I hope others also get to read my reply to you.
Although there are incidents when people began to get the symptoms of a Chronic Illness , like PMR or GCA after a vaccination for Flu, Covid or Shingles , it does not mean that this vaccine caused the illness.
The vaccination , and few days of cold like symptoms or Fatigue that follow it as your body accepts the vaccine and your immunity changes is only , possibly, the event that you can remember happening of any difference just before you got PMR or another Chronic illness.
At most , it may have been the final trigger event before PMR , or another condition , started to give you symptoms that you could recognise as being worse or different to those you had before.
But the vaccination itself does not "give" people a condition.
Would People whom developed the final symptoms of a chronic condition like PMR after having a vaccination still have got the illness if they hadn't had the vaccine?
The answer is , most definitely, Yes.
Those people would have just had other Life triggers that happened which finally caused the Chronic illness to develop , like those events that people talk about on this forum all the time.
There are two things that cause our Chronic conditions to develop with thousands of variations in Life Types that bring on the final symptoms.
Stress , which is any positive or negative activity that is more than your body or brain can cope with at its current Health Level ( which can be anything from a minor injury to a bereavement , or , even a fun holiday , retirement or big family event).
And Genetics , or repetitive life trauma from injury or another illness on particular areas of the body or brain.
If you already have PMR you are not going to catch it again. If you were likely to develop GCA it would still have occured at some point even if you didn't take the vaccine.
In fact , catching a serious bout of Covid , Flu or Shingles more commonly triggers the development of a chronic illness like PMR or GCA than having a vaccine does. And the effect of having one of these illnesses and the long term flares they cause is far worse on the body , and unfortunately in some cases , because of your weaker immune system, can have far more severe or fatal effects.
You are more likely to have headaches , Fatigue or flu like symptoms after a vaccination if you have any type of Chronic illness because of your weaker immune system and higher sensitivity to body changes. These can be prepared for and reduced by making sure you have time to rest for a few days after the vaccination and by making sure you drink adequate amounts of water each day before and in the week after.
It is also sensible to follow the guidelines to keep away from crowds or group events, socially distance , and if you are prone to immunity infection wear your mask for a few days before and a week after any type of vaccination to reduce the possibility of you catching an infection because your immune system is less efficient in dealing with an infection while it builds the new antibodies.
I have had two original COVID vaccines, two boosters, and now I just got the new bivalent COVID vaccine (for Omicron) with nothing but a slightly sore arm. Here in the U.S. this just became available last week. So yes, I would check with your doctor, but I'm glad I got these shots!
Because they did NOT have any vaccines, two of my dearest friends died of COVID. I am glad you did not. I certainly would not take that chance but it is each person's choice. These are safe and effective vaccines that help you survive a bout or more of COVID.
I think we are all different , but, I have had five Covid injections and will be having my sixth tomorrow ( Sunday !! ) morning and have not had a single adverse reaction other than a sore arm for just a couple of days . I also have the flu jab annually and have done so for many years - I,m 81 now !, best wishes x
Long reply coming. I had Covid AstraZeneca jabs 1 and 2 and then the Pfizer booster jab at the same time as the annual flu jab at the end of October 2021. I became mildly unwell for about 2 weeks which the GP said would pass. I subsequently over the next 6 months began to suffer a series of ill health episodes including suspected heart attacks (3 paramedic callouts required during the night over 2 months which were declared to be panic attacks), bowel problems (leading to a CAT scan by the local health board's Early Cancer Detection Department which was clear), increased blood pressure and heart rhthym problems (I already have atrial fibrillation and take medication for both high blood pressure and AF), heavy colds and flu like symptoms and body aches and pains especially on waking.
Eventually after many appointments my GP practice somewhat reluctantly agreed that my symptoms as they were earlier this year "sounded like" polymyalgia although the blood test did not confirm that. One of the the GPs (reluctantly) said he would "treat my symptoms" and placed me on prednisolone in March 2022 starting at 20mg. This had an immediate benefit and since then I have attempted to reduce the dosage but still need to take 15mg a day (having got down to 12mg for a few weeks in June) to keep the symptoms at bay.
I am now faced with deciding whether or not to take the booster being offered this month along with the flu jab. The GP understands my hesitancy but says there can be no proof that the October jabs caused my long period of iill health and it is up to me.
My own uneducated opinion is that my immune system was affected by the October jabs either by failing or by going into overdrive. I have two weeks to decide about the upcoming jabs.
Can I just check , they aren't giving you the Covid booster and the Flu jab on the same day/ week are they?
I was advised that you should gave at least 4 weeks between vaccinations to prevent the body's immune system going into overdrive if they were taken at once , and therefore making it more likely that you would have an autoimmune related symptom flare.
Our system asks if you have been ill or had a flu jab in the last 28 days , and you have to reschedule the Covid jab if you answer yes to either question.
I am also concerned about the upcoming Covid booster. I had 3 Pfizer shots and for my 4th shot on May 13th I decided to "mix it up" to improve my spectrum of immunity. I always experience aches after all the vaccines, but they are not that bad and went away after a few months. After the Moderna shot the aches were much worse - hips, knees , pelvis - so stiff after just sitting I struggled to get up. Sleeping was tough. Saw my doctor and after blood tests (high C Reactive protein) diagnosed with PMR for the first time.
Started Prednisone which has relieved symptoms. Have tapered from 40 mg to 30 mg and scheduled to go to 20 mg next week with a followup CRP test. Dr said we will have to talk about next Covid booster.
Prednisone which suppresses your immune system - it seems crazy to get a Covid shot to rev up my immune system. I may change my mind after talking to my doctor, but I want to get PMR behind me before I get any more vaccines.
First of all, may I thank you all for your interesting and comprehensive replies. Since this is my first post on Health Unlocked I was amazed to receive so many comments; I can see how useful this website is for us all and am so pleased to be part of your community...😃
Of course your responses have confirmed how very different we all are, both in our personal experiences and our thoughts about them. I do appreciate that. From my own point of view, I have decided to go for both the flu and Covid vaccinations offered, but will allow 2 weeks to elapse between them. My decision has been helped by what I've read here.
Forgive me for not answering you each personally...I started to do so but then thought it easier to give a general reply.😄
May I suggest that you have four weeks between shots instead of two .
It allows you to build up the antibodies and get over any mild symptoms from the vaccine and have your system back in balance before the next one.
It also allows you to do your steroid reduction two weeks after one jab and two weeks before the next so that any Fatigue associated with that has passed as well.
Our Covid Centre asks if you have had a flu jab or an illness in the last 28days , and if you answer yes to either question you need to reschedule to help prevent the symptoms or any illness flare up by having the body cope with too much at once.
I was improving but I'm now suffering with the neuro symptoms of Vitamin B12 Deficiency Anaemia and seronegative Pernicious Anaemia and waiting on my next injection but I think I will have to decide to have the next battle and ask for the two month injections instead of three months as I can't do anything much at the moment.
As you say , the autoimmune reaction can be awful , especially if you haven't been prepared for it , and having the various conditions you have will mean you can react poorly . But the illness itself can have equal or worse after effects than the jab and they can last much longer.
Its all about weighing the benefits against the risk.
I had a nasty reaction to a flu jab several years ago and didn't have it the following year. Of course, I caught the flu but ended up in bed and on a nebuliser twice a day with nurse visits for about six weeks . It took twice that long to fully get my breathing back to normal. I definitely had my flu jab the next year.
I've had a few days of hypersensitivity and cold like symptoms with a headache after my Moderna jabs but as yet I've not had Covid so I think its worth it. The sore arm lasted longest but at least it gave me another excuse not to do the washing up!
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