I am relatively new to this site - and it has been oh so helpful to me over the last month.
Today I got my appointment for my second shot of the Pfizer vaccine for 27th Feb. Very pleased but a bit apprehensive! My background story is that I am 81, diagnosed some years ago with bronchiectasis and osteoporosis, but that has never stopped me from being very active - dog walking, pilates, gardening, travel, having fun with 8 grandchildren etc.
On 16th Dec 2020 I had my first vaccination. The following day I felt stiff and achy and a bit feverish. Thought nothing of it, but it went on and on and in fact was getting steadily worse. My GP was nonplussed but we both assumed it was an extra bad reaction to the vaccine. He sent me off for blood tests which showed raised CRP and ESR. However 6th Jan approached, the date for the second shot. I was feeling awful, could hardly move, phoned the GP who agreed I had better cancel it. He then prescribed 15mg pred for a week, just to see. Magic for 24 hours and then sheer murder. Another phone consultation, sent off to A and E to check for GCA. They thought not, which was a relief. So another phone call with my GP, increased dose of pred to 20mg and had a useful chat with him in which he casually mentioned he thought I'd probably be OK in 2 - 3 years. Knowing next to nothing about PMR this came as a bit of a shock!! Now I know better. Anyway I'm now on 17.5mg and doing well, get very tired though. And all of you keep me cheerful and well informed.
But I do wonder if the vaccine triggered something that was about to happen anyway. Thinking about it, I was a likely candidate. I already have an autoimmune condition (a form of alopecia) and my mother had PMR. My GP of course says it is just coincidence. But it's a mighty big one.
If you have managed to read this far, I would be so interested to hear any of your views.
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bussell
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Hi Bussel, sorry to hear you have had a flare. I would think it was an unfortunate coincidence and not related to the vaccine. Whatever it was that triggered it, PMR is now under control and you are now protected from contracting severe C-19 and hospitalisation.
No, perhaps I was not clear - it wasn't a flare. It was the onset. And it began literally within 12 hours of the vaccination. Prior to that no symptoms at all.
As I have posted before, my rheumatologist feels the Covid vaccine triggered my PMR. I do not get boosters! If I get Covid I guess he will prescribe an antiviral. Don't know what they can cause!! Is this a guessing game or what??
Yes I had covid in August I was in bed for a month, by September I'd been diagnosed with PMR i am only 59-year-old. I know covid affects the organ's & autoimmune system so im very weary too of the vaccine, not had my first dose yet!
Wow, i like you was a healthy 63 year old. Active no medications. I got the flu shot and within 7 days onset of PMR. 2 and 1/2 years later still have it. Coincidence????
It isn't uncommon for people to develop symptoms after a flu shot - but it is less that the flu shot causes it and more that it was the final insult to an already stressed immune system and tipped it over the edge. If it hadn't been the jab it could well have been the flu you caught because you hadn't had the jab. Loads of us had never had a flu jab.
If I have understood you correctly, what you say makes perfect sense to me - that you can be already over stressed and on the edge, so the flu vaccine/flu or covid vaccine/covid itself is the last straw that pushes you over into PMR. And you just develop PMR sooner than you might have done otherwise. A situation you just have to accept....
Yes you may be right with that but believe me my life in the previous 10 years was filled with more stress than you can imagine. Coincidence on the flu shot? We will never know. But just as they can’t pinpoint the cause Of PMR i am not discounting that it may have been a cause.
That is the point I was making - there is rarely a single cause of PMR, other than possibly the form that results from statins or the old shingles vaccine but even then it could be said they are the final straw breaking the immune system's back. All that stress in the previous years will have had some effect on your immune system as well and something came along that finished it off - in your case, the flu shot. But if you hadn't had the flu shot, it might have been something else.
Would going on statins exacerbate PMR? GP has just said my cholesterol, sugar levels amd liver function results from a blood test are all high. Has given me metformin once a day. Wants me to go in statins and I’ve another blood test tomorrow.
It didn't exaccerbate the PMR symptoms for me - it introduced different and worse ones.
I had been in hospital because of severe atrial fibrillation caused by a reaction to i.v. diazepam - ironically being used to combat myofascial pain syndrome that had really floored me, I couldn't walk. I left hospital after 1 day on atorvastatin positively bouncing and feeling better PMR-wise than I had for a long time. Within 2 or 3 days I felt weak and wobbly which progressed quickly until about 10 days later I could barely get from the back gate of the hospital to the lifts- barely 50m but up a small slope - without gasping for breath. I was only on a half dose but I stopped it immediately and after a week or so started to feel better. I had asked the pain clinic doctor and she approved the experiment and later discussed it with the cardiologist who has put NO STATINS on my notes! There is no evidence they help a woman who has not yet had a cardiac event - different for men and for a woman after heart attack or stroke.
You can help the sugar levels and possibly the cholesterol by cutting carbs - it works for some for cholesterol, definitely works for sugar levels. Do you have the numbers? Is the HDL very high? Mine is - and obviously that increases the total but nt in a bad way.
What other medications are you on? Pred can raise liver enzymes but not usually excessively.
My mantra is "no dexascan, no AA" - I was handed AA with the pred nearly 12 years ago now and took 4 tablets before discussing the homework I'd done in the meantime with a different GP. We agreed we'd wait until I had my dexa result - it was such that no treatment was required. I had my 4th dexscan in September and the results really haven't changed a lot - still no treatment required. I took calcium and vit D religiously until 2 years ago when it was causing bladder problems so I upped my dietary calcium and continued with vit D.
PMR itself can cause raised LFTs. Why are you taking vit C? Getting it from a good diet is far better - and if you take too much you just pee it down the loo! Waste of money! You should get the vit D checked - if it is really low you need far more for a short time than is in the supplements. It is unlikely to be high - but you still need to check.
It is difficult to say what effect the Covid may have had - that is still being worked out. But Long Covid is a bit like any other autoimmune disorder and they can cause some very unexpected things!! Could it be the cause of your diabetes for example?
I dont know if Covid is the cause or diabeties as original GP who diagnosed PMR and was amazingly supportive doing everything according to how I was feeling and no rush said that they may need to give me meds for diabeties if sugar levels rose due to pred but wait and see how things go. She gave me AA, Omeprazole to protect my tum amd calcium in my bones from the nasty effects of long term pred and also to tacke Vits D&C to boost calcium too. She said that way she’s covered all the areas which can be affected by long term prednisolone as much as was humanly possible. Would prevent stomach ulcers amd osteoporosis as much as they could. As she was the first person to diagnose something I’ve struggled woth for 20 yrs amd no one could find anything wrong. She specialised in PMR. Sadly she was a locum and lockdown stopped her at our surgery.
They ASSUME all these things will happen to everyone and because there is a pill for many of the ills they dish them out willy nilly. But it can be counter-productive. Some things can be dealt with without drugs and some of their drugs contribute to some of the problems - omeprazole, for example, also contributes to loss of bone density.
Thanks PMRPro, I didn’t know that about Omeprazole. If I don’t have that I do have awful heartburn, that I do know. If I have 20 mgs then I get leg cramps at night but on 10 mgs I don’t.
I’ve always eaten loads of meat, milk, cheese, eggs and fish. X
Most interesting! I have often "wondered" if my symptoms of PMR began following the Senior dosages of the flu vaccine I received. There really is no way to confirm as it is not possible to conduct any double-blind studies on individuals. That initial sense of having found a miracle drug, when treatment for PMR is begun, does taper off: and then begins the tapering down on dosage of prednisone.
Second vaccination coming up on Saturday. Slightly apprehensive but of course I want to have it. After the repercussions of the first shot, how could the after effects possibly be worse??!! Will keep you posted....
I was diagnosed with PMR 2 months after receiving a Senior dose seasonal flu vaccine. I sincerely believe that the “Senior” dose put me over the edge......will not get the Covid Vaccine.
Yes I did. And had a follow up email from them asking for more information and a helpful phone conversation. Reassuring to know they actually take notice of reports coming in.
I had the second vaccine a week ago, happily with no after effects whatsoever.
Hello bussell, I am very shocked and sorry to hear that, as an 81 year old fairly healthy and fit grandmother of 8 grandchildren, you have been struck down with PMR 12 hours after having a Covid vaccination, and you believe that "it's a mighty Big " coincidence.
Rather like Duffer55 had the flu shot and 7 days later had PMR, and lowercwmtwrch had Covid in August and by September had PMR, and PMRpro mentioning the Statin connection suspected of causing PMR, - vaccines (such as Flu vaccine, Covid vaccine), a virus (such as Covid), and a medication, (such as Statin), all put pressure on our immune system, which can then TRIGGER the onset of PMR.
I do wish all people had the full information about the collateral damage and side affects of viruses and vaccines, so they could make an informed decision about their health and treatment path, and have a better understanding of the causation of their medical condition.
Your Dr for example, claiming it is a 'COINCIDENCE' that you got PMR after the Covid Vaccination, counterbalanced by your own comment "it's a mighty BIG one" begs the question: should your physical reaction 12 hours after the Covid vaccination, now be reported to the Coronavirus Yellow Card site, as the MHRA "encourages anyone to report any suspicion or concern they have beyond the known, mild side effects on the Coronavirus Yellow Card site. Reporters do not need to be sure of a link between a vaccine and a suspected side effect but are still encouraged to report."
bussel, this reply is sincerely written in the spirit of encouraging clear concise accurate information being put in the public domain, including the Yellow Card system, so that people can make informed decisions about their current and future health, and is absolutely in no way meant to influence people's decisions about vaccines per se. I myself have had the Pfizer vaccine with no side affects. I truly wish you well and this forum will be your best ally. Polly
Don't worry, Poly....., I certainly did report it on the Yellow Card system. Got a prompt reply asking for more information, and then had a useful phone conversation when I gave them more details. Yellow Card seems very transparent and make public on their website all their findings. Their reporting on vaccine after effects seems to be ongoing so we'll see...I have since then had the 2nd vaccine with no after effects whatsoever. And have a sympathetic GP (on the whole). So far so good, given the situation. Thanks for your concern! And you are right, this forum is a lifesaver.
Hello bussell - I'm new to this site and have found your sharing really helpful. Thank you. I had my first vaccine in Feb and the day after I gradually started getting symptoms first in my thighs/hips, then shoulders, upper arms and then in time in my knees. Over the next 11 weeks before my second jab things were beginning to settle a little. However, I then had the second jab - by the evening I could physically feel my body flaring up across my shoulders and hips/thighs. In the weeks that followed symptoms got worse and I finally have a diagnosis of PMR - I started prednisolone 5 days ago and I'm beginning to feel I'm getting my body back again! I have a family history of the disease so I'm sure it was waiting to happen at some time but I have no doubt that it was triggered by the vaccine. as you say, I don't think it's a coincidence.
How interesting, Orangebee! Welcome to this forum. I do sympathise and hope things are settling down a bit now. If it is any encouragement, I have to say that 6 months down the line I feel an awful lot better than in Jan. More energy, more stamina, sleeping better, fewer mood swings.
However, as everyone stresses, it is a slow process. Pacing and rest are key! Still in need of a siesta every afternoon..... and yesterday I walked too much so legs feel a bit rubbish today. Hey ho. I do have a very sympathetic GP fortunately, who is quite flexible about tapering, splitting the dose, and at my request switching from plain to coated pills....it's all a learning process. But this site has been a life saver for support and good practical advice, as I'm sure you will find.
As many more experienced members than I will tell you, you have to accept that you are properly unwell, and act accordingly, and realise there's no swift road to recovery, although there are many things you can do to make that road less bumpy. I hate to sound like Pollyanna, but if you can manage to keep the optimism going that'll be a big plus. Very best wishes!
Thank you Bussell! With the pain gone, I'm raring to go but as you say, the body isn't quite ready for that marathon yet! I will pace myself and take joy in the small things I can now do again - bending down to put my shoes on for starters! Thank you for your good wishes, advice and encouragement. I hope you too will go from strength to strength.
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PMR flare or not…
Reduced prednisolone - rapid onset of discomfort but ? PMR or coincidence - what dose next?
Almost wish it was PMR...... 
Covid and antivirals (Paxlovid)
