Diagnosed with PMR May 24, currently on 9mg prednisolone daily. Doing well but I did have a flare up when I reached 6mg September - thought to be stress related.
Original cause was thought to be as a result of the COVID vaccine and or stress.
I have been sent an appointment for another COVID vaccine which I think I will decline due to the possible flare up risk.
My question is - Is it advisable to continue with COVID vaccinations and flu vaccinations while suffering from PMR. Wondered what the current advise is.
Thanks in advance.
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Glynawel
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Although it may be thought your Covid vaccine was the beginning of your PMR, I'd plump more for the stress, with the vaccine being the last straw that broke the camel's back [as can any vaccine to be honest].
Covid wasn't around when I had GCA, but I certainly took every flu vaccine that was offered, and so do many others, along with others offered.
Your immune system is weakened by the steroids, so you need all the help you can get to stave off viruses etc.. and whilst a vaccine [any vaccine] can cause a flare of your PMR, better that than a full blown episode of Flu, Covid or any other virus doing the rounds.
My opinion only, others may disagree, and at the end of the day it's your decision.
To have got down to 6mg between May and earlier than now was some rate of reduction - I wouldn't call it a taper!!! The average time to get from 15 to 5mg is about 18 months - you were WAY ahead of the curve.
Your flare in September was as likely to be as due to that speed of reduction as anything else - you are not heading relentlessly to zero, you are looking for the lowest effective dose. The lowest dose that gives the same level of symptom management as your starting dose did. If you go below that dose, sooner or later any unmanaged daily inflammation top-up will build up again and cause symptoms.
Something triggered the PMR - but if it hadn't been the covid jab, the next stress on the immune system would probably have done it - any vaccine can do it, or the illness the vaccine was to protect you against, or any other illness, trauma mental of physical, environmental factors, chemical exposre (including some medications), the list feels endless! But behind it is a genetic predisposition as well - and why not everyone exposed to all these things develops PMR.
Many of us here had PMR long before ever having a vaccine, not even flu, certainly not covid. My first Covid jab was fine, the second triggered a tiny flare, mostly fatigue, the bivalent one 2 years ago made my existing, PMR-triggered atrial fibrillation go into orbit, it was improved with a change of medication and cured with an ablation this year. The covid jab a year later had no effect on anything. I'm booked for my next annual jab in a week or two - that is all you get here. So far I haven't knowingly had covid - despite being on pred and another hefty immunosuppressive.
It's personal choice - but mine is to do all I can to protect myself from nasty diseases!
PS - just to say, the profile isn't asking for personal details in the bio, it is for a background to your PMR to help us help you. Knowing if it is PMR or GCA you have, how long you have had it, difficulties in diagnosis and your pred dose and tapering history as a basis means we can avoid telling you irrelevancies for you, repeating ourselves or other time wasting activities! Not nosiness ...
I’m interested that you say ‘annual jab’. Here in the UK nagging emails urge me to have another covid jab six months after the last in April. So far I’ve ignored the nag especially as the last one -Moderna- made my heart jump around. I’m waiting for a nuclear perfusion scan in any case so I don’t think it sensible to jab before. But who knows?
Italy has only offered them once a year since the end of the first year and it seems to work fine. I really feel some of the problems were because they did them too frequently in the UK. I think it was the Pfizer bivalent that made my a/fib go nuts (didn't really pay attention) but the one the following year did nothing, As I say, a change of medication helped greatly, the ablation has cured it. I probably would never have been offered the ablation if it hadn't become so bad - wasn't appropriate when I was diagnosed 12 years or so ago and then it was well managed with medication. If diagnosed now I'd have been offered it straight away.
Hi. Thanks for this. I have checked back on my steroid card. First started on steroids 7th April 15mg for 3 weeks, 19th reduced to 12.5 for 3 weeks, 17/5 reduced to 10mg for 4 weeks, 12/6 9mg for 4 weeks,10/7 reduced to 8mg for 4 weeks, 7/8 reduced to 7mg for 4 weeks, 5/9 reduced to 6mg for 4 weeks. 1/10 Flare up and increased back to 10mg due to be reduced next month so will have been 6 weeks on 10mg.
Does this seem too fast. All done according to GP? x
It isn't too fast as long as it works and it obviously did for you - for many they would have flared far sooner. The minor mistake now has been leaving you at 10mg for so long. Our way of dealing with a flare is to add 5mg to the dose where you flared for up to 2 weeks - so you would have gone to 11 mg for only a couple of weeks and then we would have said drop straight back to 7mg and stay there. And now we would say to taper in 1/2mg steps as you are now very close to your lowest effective dose - and it will be harder to reduce the dose without the symptoms reappearing.
He must have been reading the forum!!! There is one well-tried management plan that keeps the patient at 10mg for a year - developed by the rheumatology group at Bristol under Prof Kirwan some years ago. The student who wrote it up is now Professor at Luton&Dunstable, specialising in GCA - and still using the approach because it works:
They don't really know - most GPs don't see that many patients consistently in their career, especially these days, so they don't have that much chance to experiment and work out what works best. They taper differently and much faster with other uses of pred and have been scared senseless during their training about the evils of long term pred - but in the UK there is no other choice for the management of PMR and PMR can last a long time, not the 2 years some doctors will try to tell you.
Over the years I have been on the forums, some 16 now, I have had a lot of opportunity to see what happens when patients are told to reduce at breakneck speed - and it almost always ends in tears, a patient back where they were to start with, a doctor doubting their diagnosis and ending up with a higher total dose of pred than necessary. A few of us worked out our own ways of reducing the dose so it "hurt" less and avoided flares - you could identify quickly you had got to a dose that wasn't quite enough and go back. We've seen and read about most aspects of PMR. GCA and steroid tapering and applied some science and logic to it all. After all, we have the time and experience to know what can happen.
Hello, what PMRpro said is so true. We are not required to 'head relentlessly to zero' as regards Prednisolone. The first two GPs I saw had this attitude and both told me I needed to be off it after a few months. So I took the printed schedule I was given and did what it said. Long story short I arrived on the forum a few months ago in a muddle and not knowing which way to turn. Thanks to advice from the knowledgeable members here I am finding the right reduction plan for me rather than the GP's one size fits all. Sometimes it's one step forward and two back, sometimes one forward and wait there for a bit, but I will get there, as my body adjusts, and I am grateful for the input and encouragement.
Hahahaha! That comment really made me laugh. 😄 I know the situation itself isn't particularly funny, but your comment was so apt and just appealed to my sense of humour.
Hello, yes of course. It was exactly as you have described a bit further back except I never got below 12.5mg. The drops were too big and too fast as I am sensitive to medication. I yo-yoed up and down for a while but once I found this group with its common sense I am doing better, but am still at 12.5mg. I see a rheumatologist next week.
I too was diagnosed in May 24 and have just got down to 7.5mg and will stay here until the new year, your reduction seems really fast. I have had both Covid and flu vaccines this year without issue, I had a week between them and different arms.
Well, I could be so very wrong and I was always a vaccine advocate, but I developed p.m.r. after a vaccine followed quickly by a Covid infection....so was it a mere coincidence....possibly. But really I'm not in any rush today to get further vaccine's.
ANY vaccine can be the final trigger for PMR, as can the illness they are to protect against. Or any other illness, or trauma, both mental or physical. Or a host of other factors. Autoimmune disorders usually result from a lifetime of insults/stresses on the immune system and eventually one seemingly randome event is the final straw that breaks the camel's back and the immune system goes haywire, unable to recognise body as self and so it attacks it as if it were an invading virus or bacterium.
Just sharing in the interests of balance. Reading all the concerns here and online generally about vaccines for Covid and flu, I was in two minds about getting both while I am struggling with PMR and on Pred. But my last blood test results showed that my markers for immunity are very low, I decided to have both three weeks ago. I have to say that apart from a week’s soreness at the site if the Covid injection, I had no ill-effects I had the Pfizer version of the Covid vaccine.
Not sure if this will be of any help but the spring vaccine made things quite bad for me. I wasn't sure about the autumn one but had it after reading comments on this site, it was absolutely fine this time. I know we are all different but my reasoning was that the vaccination may make a covid bout a bit less of a problem.
When I went for my covid Vaccine in early October I had just started on 15g Prednisolone. I asked the nurse if this was okay, she went to double check with the Dr. They were happy at that dosage to give it to me came the reply, so possibly at different levels they give a specific variety...
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