Increased symptoms after Vaccination: I wonder if... - PMRGCAuk

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Increased symptoms after Vaccination

Predderman2020 profile image
37 Replies

I wonder if anyone has had this.

After my first AZ jab (March), I was very 'off' for about a week. I also had a return of PMR symptoms for a lot longer - eg wrists, ankles, general discomfort, wobbliness and brain fog. To see if it was a flare, I went up to 30mgs for 5 days, then back down in stages, 25, 20 to 18.5mgs (now). No improvement or change for better or worse. So I ruled out a flare.

Now I have had the second jab 10 days ago, the adverse effect (in PMR terms) has been much more severe, and is sustaining.

I don't regret having the jabs (although an autumn booster holds a degree of concern!), but would like to know if anyone has had this experience and whether it has faded away eventually.

Thank you once again.

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Predderman2020
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37 Replies
PMRpro profile image
PMRproAmbassador

There have been a few posts and a lot of comments that suggest quite a few people have developed symptoms in response to a jab that could be flares. For some pred helps, for some it doesn't. I was fine after the first Moderna jab - but it was fatigue and stiffness after the second which lasted at least 6 weeks. It is improving now. I was hovering around 13mg at the time and went back to 15mg - the stiffness starts tp return just by dropping to 14mg.

Predderman2020 profile image
Predderman2020 in reply to PMRpro

OK - good that the effect abates - thank you

yogabonnie profile image
yogabonnie

I think the reaction is good on one hand...meaning your immune system is working! fighting that jab!. I had a smaller reaction, none to speak of, but then a FLARE of the PMR. I increased my dose.. doubled it..for a week and dropped back down and that took care of the pain and I am back where I was... and have shown antibodies from the vaccine. Hope that answers something or at least lets you know where someone else is with vaccine and flare! good luck hope you are feeling better soon.

Predderman2020 profile image
Predderman2020 in reply to yogabonnie

thank you, Yogabonnie - appreciated. T

cranberryt profile image
cranberryt

I got a jab with only one dose. After a week I had a major flare and eased up to 9mg. I am now almost 4 weeks post jab and am hovering between 5 and 6 mg to control the increased pain and stiffness. It took me a year to get from 7mg to 3 so I hope I don’t end up stuck here for long.

Predderman2020 profile image
Predderman2020

Thank you. Do you feel this is going in the right direction, however? T

autumnlass profile image
autumnlass

I’ve had 2 Pfizer jabs, the 2nd was on 6 April. I had awful fatigue after 2nd jab, which lasted nearly a month. It’s nearly 6 June and I’ve had mini flares on 7.5 mgm, but before 2nd jab was on 7 mgm. I don’t think that I’m ready even now to start reducing again and I put it down to side effects of 2nd jab. Maybe I’m wrong. However today weather has been glorious and have done 11k steps. I really hope you’ll feel better soon with warmer weather. 💐

Predderman2020 profile image
Predderman2020 in reply to autumnlass

Thank you - one month later, and I believe that I am starting to feel better. Good luck to you.

I had 1st as end of feb felt awful for about a wk after went up on pred was on 10 then 11 then 12 and now 13 had my 2nd on 18th last wk and had headache very achy for about 24hrs then felt fine, I didn't need to alter dose on 2nd

Theziggy profile image
Theziggy

No reaction here after both AZ jabs

ClarkB profile image
ClarkB

Some reactions to the AZ are severe it seems, regardless of whether you have Polymyalgia. My son, (who doesn’t have it), shook uncontrollably, he felt freezing cold followed by hot sweats and he had to change his sheets. He had a persistent headache, fatigue and achyness for a few days. My friend had the same bad reactions , with shaking for a couple of hours. Her reaction to the second AZ jab wasn’t as bad. She took paracetamol prior to her jab, followed by two hourly alternate doses of ibuprofen and paracetamol. My partner had no symptoms whatsoever, neither did some other friends. I suppose it’s some small comfort to know that you’re not the only person having severe reactions, which can be quite disturbing at the time. I have PMR and other conditions, but only felt fatigue related to my Pfizer jab. When I had flare ups pre Covid, I didn’t seem to benefit from raising my steroids, only in the early days.

PMRpro profile image
PMRproAmbassador in reply to ClarkB

Younger people seem to have worse AZ reactions - a lot of NHS staff reported reactions like that and were off work which didn't help of course!

Predderman2020 profile image
Predderman2020 in reply to PMRpro

nice to be counted among the younger group for once!

ClarkB profile image
ClarkB in reply to PMRpro

I read that, although my son is in his forties and my friend, her seventies. I wonder if the reactions are worse with people who have underlying health conditions? My partner has no health issues and had no problems with AZ. Maybe coincidence and we simply all react differently!

PMRpro profile image
PMRproAmbassador in reply to ClarkB

That is the most likely answer!

Flivoless profile image
Flivoless

My PMR first started a few weeks after receiving my first AZ jab. Probably just a coincidence but who knows really?

BonnyQuine profile image
BonnyQuine in reply to Flivoless

Mine started the day after my first Pfizer jab, end Jan 2021. Told it's coincidence, but didn't feel like that. Pred not new to me, as was on it for GCA from Dec 2016 - Nov2020.

Because of steroid-induced diabetes, tried for 3 months to do without more pred - until couldn't stand pain n stiffness any longer.

Started pred 13th May. 10mg worked like magic for pain relief. But have had to keep increasing the dose - up to 15.5mg, and stiffness still noticeable today.

Am considering what to do next. No use asking GPs, even if I can get to speak to one. They don't seem to have much idea. Maybe up to 20 mg for a week? Or more?

Am aware that starting a more effective dose, sooner, might have been wiser.

Predderman2020 profile image
Predderman2020 in reply to BonnyQuine

Sorry to hear that. Raising my dose (even to 30 mgs for 5 days) had no beneficial effect. Pred wasnt the answer to my AZ vaxx reaction. I have heard a number of reports of improvement only after at least a month & longer. I feel I am getting somewhere now after a month, but still pain (wrists) and stiffness (shoulders). Good luck.

BonnyQuine profile image
BonnyQuine in reply to Predderman2020

Thanks for that - gives me hope. A month, or even longer, is manageable. I went up to 19.5mg on 8 June - and that did work. Been coming down v slowly since - now 18mg. Usual fatigue etc, but pain zapped. Fingers crossed.

Wonder why there is so much variation in our responses.

Predsharer profile image
Predsharer in reply to Flivoless

My PMR started just a few days after my first AZ vaccination inFebruary

Norski1 profile image
Norski1

Hi Predderman2020

I was on 8.5mg prednisolone in October 2020 when I flared the same day I had my flu vaccine. Increased dose to 15mg which did help. I was on 15mg when I received my 1st covid jab on 26 Jan 2021 which resulted in another flare 2 weeks later and had to go up to 20mg prednisolone. I was still on 20 mg when I received my 2nd covid jab on 7 April 2021 and 2 weeks later I started flaring again. It has resulted also in the return of my Gca and I am now on 60mg prednisolone. I rue the day I had those vaccines and will not be having any of them again, this has been horrendous, Take Care, N

Predderman2020 profile image
Predderman2020 in reply to Norski1

I can understand that! What a price to pay. I hope things settle very soon.

BonnyQuine profile image
BonnyQuine

PMR started the day after my first Pfizer jab, end Jan 2021. Told it's coincidence, but didn't feel like that. Pred not new to me, as was on it for GCA from Dec 2016 - Nov2020.

Because of steroid-induced diabetes, tried for 3 months to do without more pred - until couldn't stand pain n stiffness any longer.

Started pred 13th May. 10mg worked like magic for pain relief. But have had to keep increasing the dose - up to 15.5mg, and stiffness still noticeable today.

Am considering what to do next. No use asking GPs, even if I can get to speak to one. They don't seem to have much idea. Maybe up to 20 mg for a week? Or more?

Am aware that starting a more effective dose, sooner, might have been wiser.

Though I note your sequence of doses didn't seem effective.

No joke, is it.

PMRCanada profile image
PMRCanada

My case is a bit unique in that when I got my first jab of the Moderna vaccine on May 4th, that evening I developed a terrible headache, fever, chills, and sore throat. I thought it was side effects from the vaccination.

As the week progressed the symptoms seemed to get worse so I upped my pred dose from 9mg to 11mg. The morning of May 8th I woke up with upper respiratory congestion and spit up phlegm that was pink with streaks of blood. I immediately called Tele-health (here in Ontario, Canada) and the nurse advised me to see a Dr. It was a Saturday so no chance of seeing my own, so I went to the emergency dept of our local hospital.

They did a chest X-ray, bloodwork (my CRP was 15, normally under 4 the last 3 years on pred), and a Covid test. Left with antibiotics. Received a call from my GP that I tested positive for Covid. There had been a positive case in our home and our step dad was in ICU. I had been tested April 23 and 28 negative, and was advised by public health I could receive my vaccine May 4th. My doctor believes I was positive when I went for my vaccine and didn’t know it (likely in the 5-7 day incubation period before symptoms emerged). He also mentioned that having my inflammation managed well (with pred), helped me overall to fight the virus.

All this to say I’m doing fine now. It took about two weeks for symptoms to lessen, and I feel very fortunate I did not have a higher viral load and difficulty breathing. Not sure how my immune system dealt with both the virus and vaccine, but just got latest blood work back and ESR 21 (a bit high for me), but CRP was 1.4. So I have lowered my pred to 10mg last week and this, and will attempt to lower it back to 9mg if all is well.

Of note our step dad is slowly recovering at home, trying to gain back the 27 pounds he lost in the month he was sick. Meds had to be adjusted, and he too was very fortunate he did not have symptoms like coughing and shortness of breath given he is a heavy smoker!

I’m scheduled for my second jab on Aug 24th (or earlier given our ramped up vaccine roll out), and even though I’m sticking with my decision to get it, I have some psychosomatic fear about doing so given my first experience. Who knows how many antibodies I have or will will create??

There seems to be more and more research being done regarding Covid, the vaccine, side effects and efficacy in those of us with compromised immune systems/autoimmune conditions. In the meantime I feel for all of you who have had a negative reaction and who are trying to deal with the fallout. I do wish you all the best as you make the necessary adjustments, and hope you will be free of flares moving forward. Don’t forget we have each other on this site, and it’s comforting to have people to ask questions of who “get it”.

PMRpro profile image
PMRproAmbassador in reply to PMRCanada

He is a bit younger than you are - but my grandson had exactly the same experience. He had his first jab and started with Covid symptoms that evening. He is a student nurse and had probably caught it during placement in a hospital. He wasn't too bad but it did persist as mild Long Covid so when he went back to placement he couldn't manage and was signed of for a couple of months. He had his second jab - and it was fine.

PMRCanada profile image
PMRCanada in reply to PMRpro

Interesting! Sorry to hear of his (mild) long term symptoms. Same thing happened to my sister-in-law...jab in afternoon, Covid symptoms emerged that night. 3 weeks of terrible symptoms (coughing, fever, chills, fatigue) and her poor (older) husband had the same and died suddenly at home on day 15! He had a pace maker and in his 80’s, but still a shock for our family.

She is hesitant to get her second jab, I’ll be getting mine for sure. As my GP said, better to have some protection than none.

Of note, my daughter has been accepted in the nursing program and starts studies in Sept. So glad there are younger folks willing to explore a career in the health field...we need all the help we can get. Wishing your nephew healing and recovery sooner than later.

PMRpro profile image
PMRproAmbassador in reply to PMRCanada

I think he's fine - as a nursing student he did get the jab very early on even by UK standards. There does seem to be something of an increase in enthusiasm for healthcare at all levels - the one certain thing is you are unlikely to be out of a job even without a pandemic. Wehn it comes out that quickly it wasn't the jab that did it, you caught it at least a few days before. It seems as if the Indian variant is a high speed version - some people are developing symptoms within a day or two of being infected.

Viveka profile image
Viveka

As I've said before my GCA symptoms (sore swollen TAs) started within a couple of days of the AZ vaccine in March. Before that I had had some low diffuse headaches alongside regular migraines. Who knows if it would have developed anyway - the vaccine certainly kick started something. On my second vaccine I developed PMR symptoms overnight - most obviously R hip became sore and unstable plus shoulders, calves, shins, sacrum, neck all sore. It had gone by the next day and touch wood so far have only experienced the odd twinge except the sacral spine which grumbles off and on for some reason. Honestly don't know if I will have a booster. Will depend how I am in the autumn. Will try and hold out for Phizer.

Predderman2020 profile image
Predderman2020 in reply to Viveka

Thanks - me too for the Pfizer in autumn.

Lovebikes profile image
Lovebikes

I hope this doesnt feel like rubbing anyone's nose it and I may take this all back next week when I get my second AZ jab. However, I had my first jab 8 weeks ago and felt shaky on day 10 but since then all my PMR stiffness has completely vanished. I'd also heard something that some people with long Covid (for some definitely auto immune connected) sometimes recovered after their jab. I was just wanting to throw in an opposite experience from the Covid jab before everyone feels too gloomy about getting it.

Predderman2020 profile image
Predderman2020 in reply to Lovebikes

Well done! Hope it continues. I love the happy reports. T

Cat2Mom profile image
Cat2Mom

I fully believe that my first ever autoimmune symptoms & elevated RA factor was triggered by the Pfizer vaccine. I've been in horrible pain since about 3 weeks after the 2nd jab. I'm not able to get in to see a rheumatologist until June 13. Until then, I'm suffering terribly from low back pain and hip pain. Tramadol, gabapentin, & muscle relaxers are my best friend. I am undiagnosed. Could be PMR or AS. We don't know yet. My PMD won't give me prednisone because of my diabetes. I will never be convinced that the vaccine did not trigger this.

Nhawk profile image
Nhawk

I was diagnosed with PMR about a month after my second Moderna vaccine. I asked my rheumatologist about a possible connection. She pointed out that if there was a connection between PMR and the vax, she would have seen a major increase in patients. She says she hasn't. For the time being, I'm calling the relationship between the two ISunlikely, but I wouldn't rule it out completely.

HeronNS profile image
HeronNS in reply to Nhawk

I don't think it's necessarily the case that she'd have seen a "major increase" in patients. That's assuming that it would be very common side effect and it isn't. I think the only truly common side effects are the ones nearly all vaccines have: some pain and stiffness at the injection site, and sometimes fatigue and even a slight fever, a fluey feeling, for a day or few. She wouldn't expect to see anyone with PMR (or a blood clot) because these are rare. It's possible, I think, that a person who develops PMR as a result of a vaccine may have been on the cusp anyway, because so many of us can point to one or two events which gave rise to the disease, but they are often the culmination of a series of stressors of various kinds. On the other hand, would it take a month for a side effect to develop? This I don't know.

Looking at my diary I am now convinced that my first Pfizer vaccine did emphasize the flare I was already in because I was much worse for a few days afterwards. It seems clearer now than it did at the time when I was in the middle of it.

PMRpro profile image
PMRproAmbassador in reply to Nhawk

SHE might not have - but any vaccine can be the final straw that breaks the immune system's back and throws it over into autoimmune mode. When my PMR started it took months to get from the odd aches and pains anyone might expect after a vaccine (I hadn't had one though) to something that was bad enough to send me to the GP, never mind a rheumatologist. And there are a lot of autoimmune disorders - most of them take a long time to diagnose. I think what is more common is that the vaccines lead to flares of any autoimmune disorder - but not in everyone,

Nhawk profile image
Nhawk in reply to PMRpro

Obviously we all have a vested interest in this. I'm sure my rheumatologist hasn't looked at the data and is just relying on her impression. Still, it's a good point. With high rates of vaccination, even a low base rate disease like PMR should show up.

The place to watch for this data is Israel. They have a very high vaccination rate. About 30% of their population comes from Eastern Europe, which is a risk factor for PMS. They also have a comprehensive health service that is very good at detecting this kind of data. If PMR could be triggered by vaccines, it will be visible there.

PMRpro profile image
PMRproAmbassador in reply to Nhawk

"even a low base rate disease like PMR" - except that PMR is actually one of the most common causes of rheumatic cymptoms in the over 50s. Not that common relative to all ages - but very common in older patients.

The high risk patient is typically from Northern Europe, with Scandinavian genes - and it is very uncommon in patients with Middle Eastern origins. So I'm not so sure that the Israeli work will catch much about it.

web.uniroma1.it/spec_medint...

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