Good afternoon everyone
I am 52 years old and was diagnosed with PMR in June this year after 6 months of debilitating pain. The Dr commented that I am young to have this condition but the pain started immediately after having the Pfizer Covid Booster vaccine last November. Has anyone had anything similar happen … was previously extremely fit and healthy before the booster training weekly lifting weights to becoming immobile overnight and now piling on weight by the day on Prednisone 🥲
You will find lots of references to this if you search the forum.
In my case it happened 5 days after Astrazeneca.
There is no single cause of PMR/GCA - it is an accumulation of the effects of insults to the immune system throughout your life, part of the reason it becomes more common as we age. There are many factors - illness, injury, stress both emotional and physical, environmental factors, chemical influences, the list goes on and on. Amongst all those are vaccines, not just Covid but also flu, shingles and others which all poke the immune system to achieve their end of protecting us from the diseases. If it weren't the jab, it could be the illness it is to protect us from - together with the risks embodied in such diseases. Or the next factor you encounter, an accident or illness. And the vast majority of us here had PMR before Covid was ever heard of, never mind the jab!
I was still 51 when my symptoms started, though I wasn't diagnosed for 5 years. There are quite a lot of us who were in our 50s, a few who were in their 40s. We believe there would be a lot more young patients if they didn't have such a blinkered view of age - and probably quite a few fibromyalgia patients very likely have PMR but are ignored because they are "too young". In the medical literature the youngest recorded patient was a male student of 24.
If it is any consolation, we have found that a lot of post-covid vaccine patients are able to get to a low dose fairly quickly. It is a bit soon to know if they have a significantly shorter disease course though.
Weight gain - cut your carbs drastically, especially processed carbs and added sugar. It really does work.
thank you so much … I can’t get any help from doctors so was delighted to find this forum. Thank you 🙏
Great reply. Thank you!
hi
Maybe have a look at this for general info -
healthunlocked.com/pmrgcauk...
-and then browse through FAQs for anything specific -but you’ll always get an answer -.
I agree with PMRpro re the carbs. It's the refined carbs which make people fat rather than fat per se. Think of your diet when you were a kid - pretty high fat and relatively low refined carb I'll bet and there weren't half so many fatties around back then were there...
How could you go so long in pain without seeing the doc? I was never really one for running to the doc for every little thing myself but I only lasted three weeks with this before I had to reach out for help. Doc also said she thought I was a "tad young for it at 62" (her exact words).
Like you I've been on the weights almost as long as I can remember having been introduced to it by a girlfriends dad when I was 19 and becoming instantly addicted, although I've always made a point of keeping it natural and steering well clear of the anabolics. I've been able to keep up with training reasonably well through PMR but have much reduced capability - you have to make a lot of adjustments but don't need to completely give everything up.
I refused all attempts to give me the covid vaccination - not for any loony reasons of antivax but because I had a previous hiccup with my heart about 10 years ago and don't want to tempt fate again. So far no probs at all for me on that front and I think I had a mild dose of covid back in March but didn't bother testing for it.
Had a big PMR flare which started a couple of weeks ago till by last Friday I was as stiff as a board which was when I found this site and started to really learn about what was going on.
Stick around. There's a lot to learn and a lot of very knowledgeable people on here
thank you GibsonLesPaul …. It’s probably not hard to believe that it took me 6 months to actually see a doctor after about a dozen blood tests and a very teary phone call to a doctor! It was extremely debilitating mentally and at times questioned “what was the point living like this” but I have an amazing partner who was so attentive and helped me up stairs to bed, and even off the sofa! I was massively failed by the NHS I’m afraid and still am if I’m honest as the steroids and associated medication hasn’t been plain sailing!
I agree that this is a great site and i WILL give up the carbs (but do love a slice of toast and butter 😂)
Thank you for your reply.
What a nightmarish experience for you. I was beginning to have similar thoughts myself before the diagnosis when I would have to force myself out of bed at 3am every night and try to walk around the house for a bit in the dark to try to ease the pain in my shoulders, and then try to get back to sleep sitting upright in my chair because it was so painful to lie down.
You don't need to give up the carbs completely you know, just cut them back a good bit and try to get out for a walk or some other gentle exercise to get your metabolism going again and that should do the trick.
sorry you are going through this Lewy1. You have taken the right steps tho. We have all found that we need to become the experts on this illness as the medics generally aren’t! If you fill in your info with your avatar (when symptoms started, what dose you’re on, you’re general location) we can assist better. There are several Pred tapering plan on here. Whichever suits you we have all found that slow and steady is the route forward. Too much dose yo-yo-ing and it makes it worse. Yes, Pred has lots of side effects however most can be managed with some diet, activity and supplement changes. Stick with us and you won’t feel alone with this.
In fact Pfizer actually comment in the possibility of the vaccine triggering such things as PMR on their website.
Have you got a link or a screenshot of this?
There is actually quite a range of work done in this context - and not just Pfizer is implicated. I googled "pfizer covid vaccine polymyalgia rheumatica". Here are a few links:
ncbi.nlm.nih.gov/pmc/articl...
cureus.com/articles/100523-...
It isn't just PMR - other rheumatic disorders have similar problems:
rheumatology.medicinematter...
but the A-Z vaccine didn't compare well at all.
I had noticed that the number of clinical references was growing but people keep saying that Pfizer has acknowledged it without showing where. I would be interested to see the reference.
wow same date & time for me as well . I mention it on my info . I’m on 22 mg steroids. Hardest thing for me is anything like lifting sweeping wiping window . Weak muscle and out of breath . But can walk a fair distance. Fatigue never far away esp if I overdo it . Taken me 6 months to except it but hopefully it will go one day soon . Good luck
Hi Lewy1
You mention problems with associated medication. Are they asking you to take AA without first giving you a Dexa scan to see if you need it ? A stomach protector that is disagreeing with you perhaps ?
I have no idea what a Deca scan is! I am taking combined calcium/vitamin d tablets as I don’t have enough calcium in my diet! Love cheese but don’t have it due to weight gain …. No win situation there!! The calcium upsets my tummy and I also take omeprazole and Alendronic acid (one a week which I call my funky tablet as used to make me really poorly)! I just never dreamt I’d end up like this but life goes on!!
As PMR Pro said it’s not the fat that causes weight gain, it’s the carbs. Many of us have cut out simple carbs (bread, potatoes, pasta, sugar) and actually lost weight. Full fat yogurt and cheese should be fine. Many of us advocated to get a Dexa scan to check bone density before deciding on Alendronic acid. I was on Pred 7 years and never took it and my bones are at baseline. I suspect they neglected to tell you not to take calcium and Pred together? It can interfere with Pred absorption. Unfortunately the health staff don’t have the skill or knowledge to prepare us to manage chronic or long term conditions, it’s up to us!
I have not been told not to take calcium and prednisone together. Thank you for that information!
Hi Lewy 1 - like you AA made me very unwell and so I tried to get a private bone scan (Dexa scan) so I could stop it - tried 3 different versions of bisphosphonate by the way! Anyway, eventually got my NHS Dexa ahead of private and bones in normal limits so stopped it altogether, they say they will repeat Dexa after 2 years. Calcium also makes me sick but the swallowable AdCal rather than chewable is better for me - so I take a reduced doase of that and low fat dairy increased... I take omeprazole 20mgs but have 5 gastric lesions courtesy of preds (found 1 year on from diagnosis) and so the dose is now twice a day. Do get any gastric issues dealt with quickly, I delayed a bit!! Life does get better but it is important to go slowly in to the future being gentle with yourself, gentler exercise to start but regular and yoga, meditation, stress reduction!! - - and do not rush the tapering!!! I also have an afternoon nap when I can, am still working (62) I have gained weight but not too much with a reduction of carbs and a change to gluten free, not sure what difference it makes to PMR but deffo my gut feels better. I have found this site very helpful as well as joining PMRGCA UK and a local support group. Good luck. x
My PMR was triggered by HEP A travel vaccine in 2018 and then GCA triggered by 2nd Pfizer vaccine in 2021. I have continued to have all vaccines as it could have been triggered at any time. I have also had a flare of symptoms following each booster, including the latest Covid booster last week
Hi there Susan, I was just wondering how you managed to get a diagnosis of GCA after your 2nd vaccine? I am still struggling more than a year down the line but they won’t take a look again as my temporal artery scan was all clear.
I already had PMR which made the likelihood of CCA. I had severe headaches and my vision was blurry. Went to GP who sent me to A&E and they admitted me. I was put on really high dose steroids (500mg) and the next day was sent to the London eye hospital who could see my left pupil was not reacting to light and my right was fine, the pain was all left side. The pain was along where my blood vessels were, so he confirmed the diagnosis and upped the steroids to 1000mg for 3 days. Had a biopsy after which was clear. As the symptoms went straight after the steroids they confirmed I have PMR/GCA. It was the visual disturbance that made them act fast
Thanks for the detail. So glad they took you seriously. My temporal ultrasound was after six days of steroids and although I pointed this out ( and the fact that all symptoms disappeared within 48 hours of starting the steroids) I was told to toddle off home. Nearly all my head symptoms have subsided over the past 12 months but I now have incredibly sore hips/pelvic girdle. But without any shoulder pain. I suspect I need to revisit my GP.
hi Lewy1. Exactly same for me was 53 healthy active had the same vaccination as you and before long sore throat and neck then hip stiffness and aches then shoulders then could hardly get out of bed or roll over. Took weeks and weeks for Dr to actually even see me and when they finally did shocked at lack of movement and then they panicked in case of GCA then pet scan and hi dose steroids I do feel fit you it’s shocking to go from fit and active to feeling 20 years older overnight and the constant stiffness and aching and tiredness just gets you down
yes. Had my 3rd vaccine Pfizer on the Tuesday. Stiffness became apparent on the Sunday. Was confused by symptoms , but gradually diagnosed in December 21. Vacs- June 21. I’ve always been suspicious,but seemingly vaccines in general can trigger PMR 🤷♀️🤷♀️🤷♀️
Not sure here in UK we were told “you couldn't get covid or transmit it if you've had the shots? ”
.,, we’re told told we were less likely to be hospitalised or die from it…and that’s the message that’s always come from this forum.
hi yes. Two weeks after the AZ aged 50. I believe as does my rheumy that it was triggered by the jab. I use the word triggered as maybe it was there waiting to explode ..
rather than me boring everyone with my tales of woe yet again. Have a little stalk of my posts. You’ll get the picture Currently down to 10mg but needed 25 to start. Zero this jam for a scan. Back up to 20 so I don’t think this is too bad now. I’ve done it extremely cautuiously as in dropped tiny amounts
My friend warned me about the Pfizer vaccine but I laughed it off. I developed PMR two weeks after my 2nd jab. Like you, it took ages - about 6 months - to get diagnosed, at my own suggestion after a lot of Googling. Due to covid I never got to see a doctor and it took weeks for each telephone appointment. I was referred to physio by one GP which didn't help - made things worse actually. Another told me to get a massage. Eventually I found a GP that agreed with my suggestion of PMR but by that time it had progressed into GCA.
I have continued to have the Covid jabs, though subsequent ones have been Moderna.
Pfizer can't be held responsible for what the media decided to say. Or politicians who don't understand science. Stopping catching it was never expected, no vaccine achieves that in any disease, transmission was not "tested" but it was said it didn't prevent transmission - I posted repeatedly about that fact right from the start.
And the CDC said in 2012:
"To stay protected from smallpox, you should get booster vaccinations every 3 years. When there IS a smallpox outbreak, you should get the smallpox vaccine if you are directly exposed to smallpox virus."
The reason we currently do not need boosters for smallpox is that it is effectively eliminated. You can't compare it with Covid.
Hi I also have pmr I started fourteen months ago it came on just two weeks after I had the Pfizer injection the rhumotholigist said thats what caused it ,been on prednisolone since every time I taper off I have to go back up now on five mgs hoping that works and don't have to go on a higher dose . , before this I also was fit for my age I eas 75 when it started used to walk round the golf course twice a week but sadly now don't do much walking due to pain in my hip or back I find the pain in my shoulders and arms really painful especially in the morning ,take care .
Oooo I hear your sadness about toast and butter. Keep that in but cut out at other meals. Find your fave veg and pack your plate with that with your protein. I’ve changed from beer to gin and slim. All little changes help. Good luck going forward. Keep us informed. X
I will do ☺️
yes I think I got pmr from having covid first 2 vaccine s. Then having flu jab. My pmr started about 2 weeks after flu jab. I had just had a bad cold which I had antibiotics for a couple of weeks before my flu jab In my opinion I have got pmr. From having within a year. 2 covid vaccine s. Then a bad cold with antibiotics then a flu jab. I got covid booster after I started with pmr. Just a few weeks into it. I cannot prove. What I think. But you know your own body. And flu jab has been recognised has sometimes bringing on pmr. And I believe they are looking into covid vaccine giving you pmr as well. Hope you soon get off prednisone. It’s horrible but does the trick. Take care
I got PMR just after a flu shot. My first covid shot flared me for f4 months. I haven't had any more shots, but I also have myeloma which according to a Dana Farber study means I get 5.6% protection from a covid shot, so am just staying locked down. Good luck to you - it is rotten. Jane
I had a similar experience. Good health for my age leading up to October 21 when I received my COVID booster and flu jabs. Then went downhill over next 6 months including 3 call-outs of paramedics due to suspected heart attacks which were put down to pericarditis or panic attacks(!?), CT scans to check for cancer (none found), cardiology tests and consultations (nothing apart from atrial fibrillation already known about), several GP visits and generally feeling fatigued and unwell. GP eventually and a bit reluctantly agreed everything indicated PMR and prescribed prednisolone. Improvement ensued and now slowly tapering. At present on 13mg - originally on 20mg in April. I have no doubt the vaccines sent my immune system into reverse or overdrive. Despite that I have just had the next booster and flu jab last month and feel nothing adverse.
Hi, my PMR started about 10 days after I had the Pzifer booster in December2021, I also considered my self reasonably fit for a 75year old
I think I have got off quite lightly, I am have got down to 2mg
In 10 months still sea swim ,and exercise, but I cut out Caffeine, and Carbs.
I was diagnosed with PMR in June 2021. I developed symptoms about 2 weeks after my first Pfizer shot. For the first 12 months I gained Ilittle weight but then it began to pile on and clothes wise I've gone up a size. I do try to keep to a low carb, non sugar diet but seems I need to be even stricter. I've just had my 4th Pfizer shot and seem to be doing ok. Two weeks ago my brother had his vaccine shot and 2 days later he went temporarily blind, recovered then it happened again, went for an eye test was sent to the hospital, checked and given 60mg of pred. He has now had a temporal biopsy and is waiting for confirmation of a diagnoses of Temporal Arteritis. He was given no instructions re taking his medication so was just swallowing a whole cocktail of meds with his breakfast (he also takes meds following a heart valve op). So vaccines can trigger PMR which, in our cases may have a genetic link as my oldest sister has also had PMR which has now been dormant for 12 years. My other sister also has an autoimmune disease as has a niece. Fortunately I'm doing ok and have used this site to help me as I can't say my GP surgery has been doing a fantastic job.
Sorry to hear this! Awful! But thanks for posting.
This is a great forum, you'll get lots of help and advice here.
Yes I had a similar experience. I am 64, healthy and active. I got 3 Pfizer shots and for my 4th shot in May, I decided to "mix it up" to try to improve my immunity so I got the Moderna shot. After all my Covid shots I feel bad for 24 hrs and have had some pain in joints and muscles for several months after each. BUT THIS TIME WAS DIFFERENT! Within a week, I noticed stiffness, pain in joints etc and it got progressively worse. Any time I would stay in one position (example driving or gardening) when I went to get up, I was so stiff I could hardly get up! I had trouble sleeping, was super stiff in the morning until I got up and got moving. Stiffness was in my hips, pelvis, knees and some in my shoulders. Called my doctor after a month and a half, he ran a bunch of tests over the next month and determined my C Reactive protein was very elevated. All other tests for other diseases (various arthritis, lyme, etc) came back okay. He diagnosed (August) PMR and put my on 40 mg prednisone. I am down to 20 mg with a followup CRP test next week. Hope to keep tapering and get off ASAP. I will not be getting the next Covid booster - I believe it triggered my PMR so I don't want to wipe out the progress I have made so far. Good luck and stay on this forum - it is very helpful. I am also on Mayo Clinic Connect - they have a PMR group too.
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