I felt I was a healthy 77 year old male in Sept 24. No family history of this type of condition. Then after Covid/Flue Jab 5th Oct 24 and within 8 days I develop the first syptoms of Polynyalgia Rhuematica being unbearable hip pain on left side when in bed at night which within days moved to both legs and arms. 3 x GP visits 2 x A&E trips for tests over weeks, it was only 9th Nov that I got a diagnosis of the condition then 20mg prednisolone to take daily which did eased my situation. But despite steroids, leg and arm pain return around 4:00 am so getting up at 9:00 am for breakfast and the next batch of steriods is still very very painful as they take 3 hours to start to work only then can walk/excercise etc. Even after 2 weeks my GP wants me to lessen the daily dose to 15mg. So I tried once but next day I was crying in agony with arm/leg pain, so past week I have choosen to go back to 20mg daily. Condition also seems to be affecting my Diabetes 2 blood sugars as they are off the scale after food. Yet with this condition in passed 6 weeks I have lost 11 Kilos in weight.
Google www state a proven link between Covid jabs to Polynyalgia Rheumatica even though it is rare (6 in a million jabs in 2012). Typical of NHS UK nothing written up. Should my GP be doing more for me as I feel I have been left to get on with it. Are there any tips in living with this and associated loss of movement/pain whilst going through the morning situation. Does it get better.
Written by
GHDirect
To view profiles and participate in discussions please or .
Hello and welcome! You will get a proper welcome reply but in the meantime I’ll start you off with a few takeaways. It can take a few weeks for the magic of the correct dose of steroid to get a hold of the accumulated inflammation. Some tell of results in a few hours but if you have had to wait a long time before diagnosis (common) it might take longer. It is usual to be on the starting dose for 4-6 weeks. For the GP to think about reducing while your symptoms are not controlled is not good. Knowledge or at least up to date knowledge of PMR in doctors can be patchy but to be fair to them you do need to keep them in the loop and that you them how bad it really is.
It is common to lose weight until the inflammation is controlled. Usually people on Pred need to cut their carbohydrates severely; a healthy diet in the normal sense doesn’t cut it. This is because steroids cause the liver to release its stores that become glucose even before you have that slice of bread. You may need extra help from your diabetes advisor.
PMR is caused by the immune system going off the rails and the list of suspected causes include, infection, acute illness, Covid, shock, bereavement, acute and/or unrelenting stress and vaccines. Vaccines are made to kick the immune system into a state of high alert and for some individuals it doesn’t stop there.
PMR is a life changing condition and many many of us were fit and active before our immune systems ran amok. It will get better but for now you have to accept the new, peculiar normal. Once your symptoms are under control don’t be tempted to back to normal for quite a while as the Pred is only stopping the inflammation, not the auto immune activity. This is the worst time, the start, when you have been upended without warning, put on a powerful medication with not much information. You’ll settle in and the dose will come down.
First of all - the Covid jab isn't the only trigger for PMR, other vaccines can do it too - as can the illnesses they are to protect you from, other illnesses, trauma, stresses of all sorts etc etc etc. It is also not a single trigger - it is the accumulation of insults to the immune system that build up over years and finally something is the final straw that breaks the camel's back and an autoimmune disorder develops where the immune system is unable to recognise body as self and turns on it and attacks it, causing inflammation.
Having started pred at last, did you also make lifestyle changes to help deal with the situation or have you tried to carry on as normal? That is helpful to give your body its best chance to deal with the problem,
I would also suggest that you try taking your pred as soon after you wake at 4am as possible. That is the time the body sheds the new batch of inflammatory substances - you are allowing them 5 hours rampant in the body to do their worst and create a load of inflammation for the new dose of pred to deal with. And that takes time. The ideal time is about 3am for prednisolone - then the blood level is at its peak when the inflammatory substances appear and they get much less of a hold and do less damage, That can often make a big difference.
However - is that the only GP you can see in the practice? They obviously really don't understand the illness - you need to get the symptoms well under control before you can start to reduce the dose and doing it in 5mg steps after only 2 weeks is very unlikely to work. Just because that is what you do in other illnesses where pred is the management, it isn't how to go about managing PMR. You start with at least a month on the starting dose - and if that isn't working well, it is reasonable to try up to 25mg in line with the 2015 Recommendations for the management
and I would provide your GP with the references - and ask if anyone in the practice has more experience with the illness. Referal to a rheumy might help - but the waits at present can be protracted. The alternative is to get a private opinon from a specialist who knows what they are doing in PMR - but that isn't a given, NHS or private.
The other thing that concerns me is the magnitude of the weight loss. People DO lose weight with PMR but not often and not that sort of amount. Such weight loss is more likely with GCA or LVV (giant cell arteritis and large vessel vasculitis) which are related to PMR, it is a spectrum of disease. It is possible that you have more than "just" PMR although you have only PMR symptoms.
I was down to 5.25mg , for 2 x weeks but today really hurt in my thighs. I took an extra 1mg and felt a lot better. I’ve never took the pred at 2/3 am in the morning even though I know it’s meant to work better. I struggle to go back to sleep if I have to get up, but do you think I would benefit from trying it, as I really want to get below 5mg ! Can you just take it with a dry cracker? I’ve always taken it after a good breakfast .Thanks
Just changing the time is unlikely to get you below 5mg if really you need 5.5mg. You will get there, just be patient!! A dry cracker isn't really considered enough - lots use yoghurt or a glass of milk but if you are on omeprazole or the like then it doesn't make that much difference anyway - unless you are a person who struggles taking pills on an empty stomach.
Your first sentence could have applied to me except that I was 74 years old at 5he time!
The advice you have given is spot on from my early experience with PMR. I clearly had quite a bit of built up inflammation prior to diagnosis, and my initial dose of 20mg did not last the full 24 hours. Two actions followed that: firstly, my very knowledgeable GP increased my dose to thirty mg ( a bit over the top maybe, but it worked). Then, at the same time, I forced myself to get up at 2.30am to take the prednisolone together with a small piece of toast and a cup of tea. Gradually, over a three to four week period, the symptoms began to ease, and I was able to start a slow tapering plan.
From what you write your situation is one shared by many on this Forum. Very few of us had heard of PMR, and how devastating it can be. If it is confirmed as PMR for you, then I recommend you stay tuned to Forum, and, in due course, have a good read of the Frequently Asked Questions, where there is a wealth of information for you to digest.
Your patience will be tried by PMR - mine certainly was - , but with certain adjustments to your lifestyle, it is definitely manageable.
Many of patients don’t have any family history of PMR or GCA [an associated illness] but some do.
Your specific issues have been addressed, but for general info maybe have a look at this- there’s a lot to take in, so maybe hang on to it, and read again in a few weeks, even months when it will make more sense to you - and yes when treated correctly it does get better, and for most it goes into remission.
I’m sorry you’re having such a difficult time. You’ve had some great advice on here which I won’t repeat- just wanted to say welcome, and that this is a waiting game, a marathon not a sprint, and it’s usual to improve over time. Loads of info and suggestions on this site!
welcome GH. There’s a great community here, full of useful advice & tips. I’m 10 years younger & like you had never had a serious health condition until PMR caught me this summer.
In my case it developed out of a bad ear infection & neither I or the doctor have any idea what caused that.
All I can say is, it’s a journey.
The steroids help me function, but I’m far from the man I was. There’s no way I’m capable of much work for now.
I bought myself an e-bike recently. 2 reasons, I’m hoping to get a bit of strength back in my legs & secondly it’s good to get out in the fresh air.
Sitting around inside is not good, but all of us on here know there are days we can’t do much else.
My doctor started me on 15mg. In the last 10 days I’ve reduced to 14mg, but if I’m honest there’s a few aches & pains. For now I’m persevering.
Hi, I was diagnosed last week. Reading posts on here I realise how lucky I am with my doctor and surgery. After 3 days in bed and realising that my groin pain (thought to be sprained pelvis due to pickleball) was getting worse and had spread to my upper arms, shoulders and neck, I phoned the surgery at 8am. First appointment with the GP was 9am, blood test that afternoon and I was on prednisolone by the following evening. It wasn’t quite as smooth as I’ve made it sound - took a bit of drama and proactively from me - but nevertheless very quick and such a relief to get the diagnosis and treatment. Like you I found my 15mg dose of prednisolone didn’t last 24 hours when taken all at once first thing in the morning. After trying various times and combinations I have settled on first dose of 10mg when I get up, usually 7am - 8 am, and then top up dose 5mg at 4pm. That is working for me but, as everyone keeps saying, we’re all different. Have you read the book by Kate Gilbert: PMR and GCA, a survival guide. 2nd edition - it’s excellent. I’m halfway through - reading carefully and annotating.
Pickleball started mine also! It was crazy bad in both hips, suddenly. When it spread to both shoulders and I couldn't function, I thought of PMR as my father had it. At first I was scared it was osteo in both hips, but I'd never had even a twinge in my life.
It took 20mg the first month and it left me in agony at 1am. Many rheumatologists now suggest splitting the dose, following forums and what people relate from their doctors. I did much better taking half at 4pm and 4am. I still split my dose, trying to get below 3mg after 22 months of this. My CRP keeps going up so I know this isn't gone. Also suddenly have diverticulitis symptoms so that could explain the CRP.
Here we can't get rheumatologists to accept referrals for PMR symptoms, and most Family Practice docs are unfamiliar with it. Internists are the ones with experience with PMR. Fortunately, I live with one and am surrounded in our social circles with all his former, retired, colleagues.
I keep a spreadsheet, notes too, and it makes a nice taper graph. Keeping track of meds isn't easy for me. I've had countless flares, having one now. Until this summer I've only averaged 1mg/month decrease. I stayed on 3.5 for 3 months, now just adding two days a week on 2.75.
I avoid supplemental CA and push dietary CA instead. Lost a lot of weight in the last year, over 10% of my weight.
"Until this summer I've only averaged 1mg/month decrease."
That is all you should be aiming for, especially under 10mg. And by 5mg, 1/2mg is good going, Top experts advise not more than 10% of the current dose but many patients can't manage even that. And the lower the total dose gets - the slower the taper should be, both in terms of the size of the step down and also the interval between reductions. From about 5mg it is not only the PMR that must be taken into account but also return of adrenal function as the pred dose falls below the physiological level of corticosteroid that the body needs to function. At higher doses the body doesn't produce cortisol because the pred does the job -but at 5mg or so, some top-up is needed,
And above all: you are NEVER reducing the dose relentlessly to zero - you are looking for the lowest effective dose - the lowest dose that gives as good symptom relief as the starting dose did.
My second bout of PMR erupted around 18 months ago (following a clear spell of about 10 years). This was about 2 weeks after my second dose of COVID. I was put on prednisolone, starting at 15 mg daily, reducing at monthly intervals to 12.5 then 10.0 and then dropping 1mg each month. I'm now at 3.5 and aiming for 3.0 next week. It's been a slow process, with one relapse at 3mg earlier in the year, so I'm keeping my fingers crossed. I'm also on Alendronic Acid and Adcal D3 for bone protection.
Hello to all members who have replied to my post and thank you for comments, suggestions knowledge. Etc. Yesterday I felt very alone with my condition, but your response is a boaster. Already I have tried moving my steroid input to early morning around 5:00 am. Got up at 9:00 this morning legs 90% but arms still painfull enough it took both to life the kettle. Sitting quiet for an hour for food to settle things start improving. Just managed 250 cycles on cross trainer so now its 12:00 and I am writing this ready for my dog walk and what ever the day throws at me. Question: If moving steroid intake time works for me how soon should even consider dropping my daily dosage
Question: If moving steroid intake time works for me how soon should even consider dropping my daily dosage
Simple answer - not yet...
Personal opinion stay at 20mg for 3-4 weeks. to really make sure current dose is adequate before you drop down. Less than that time, and you cannot be 100% sure - it can take 2-3 weeks for a flare to materialise .
Then, provided all okay to 17.5mg for same period, then to 15mg for same time... ditto to 12.5mg then 10mg.
It might seem slow, and your GP may disapprove... but if it works and it should then it's not slow... and much better for you than flaring and having to increase dose to get things back under control again.
Give it at least 3 weeks before dropping and preferably longer. Especially if you are going to persist with the cross-trainer because that MIGHT get you into trouble!!! DL has said the rest so I won;t repeat.
By the way, if you post in the middle of a thread your questions will only be seen by anyone actively following the thread which in practice means who you reply to, the author of the thread, DorsetLady and me! If you want everyone to see and potentially reply - raise a new thread.
Glad you have found comments helpful and are beginning to feel you can make progress 👍
As to your question, I would say get the pain under control ( at least 70-80% better than before pred) and stay at that dose ideally for around a month, to clear out the inflammation and allow your body to rest. That was my experience anyway, more expert people will answer I’m sure.
And can I say, be sure not to overdo the crosstrainer at this early stage ? Walking is brilliant though x
I went through this as well in the early years and then someone suggested splitting the prednisone to morning and night doses - this turned my life around and eliminated the morning pains, I am still splitting at my present 7 mg dose per day
I took numerous pain killers initially but all I needed really was to have the correct amount of prednisone to keep me pain free. It is definitely a difficult condition and I believe stress was the key factor for my prolonged recovery (6 years and counting) - I am under much less stress now and hope finally to get back to a normal life withing the next year - take it real slow on the reduction.
We do suggest that at times - approx 2/3rd am, 1/3rd later in day... it then can give 24hours relief, and better early mornings.
But you still need to be on enough Pred for your PMR.. as we say, no matter when you take it, if it's not sufficient, its not sufficient .. can't odds that. .
But only really to be tinkered with if you can't sort out a good single dose approach. So you need a few weeks where you are to see how it goes - possibly splitting to get a better result comes before starting to taper the dose. You need to be stable.
Not a happy response but my experience has taught me that tapering at even .5 or .25 is essential to minimize awful side effects but good enough to remedy pain. I started on 20 mg 18 months ago, did not start taper for 5 months only to develop osteonecrosis of the hip, caused by high steroid use according to my surgeon. I used a cane til hip replacement surgery which has worked incredibly well - but severe. Had I known this could happen I would have asked for a lower dose and sooner minimal taper. It would be worth a try.
All in all, it’s a very slow go process that teaches me patience- not that I wanted to learn!
If 5 months at 20mg was the cause, what about the GCA patients who need 60mg for a few months and then take many more months to reach 20mg?
I'm not saying the pred wasn't implicated - but I think it is naive of a surgeon to blame it on that alone. I think there must be a genetic predisposition or you were just desperately unlucky. And a lower dose may not have worked - often if you try a lower dose you need it longer to be able to manage symptoms. Which is after all the whole point.
I also had Covid vaccine enrage my PMR looking back my body was warning me after each shot but I just assumed I was getting older and less active due to the shut down but after the last booster all heck broke loose.. I started at 60mg of prednisone then added 25mg of methotrexate and finally Kevzara currently at 5mg prednisone and yes It does get better I have had moments where I felt like my old self but to date they haven’t stayed if PMR quit tomorrow I will be forever changed how ever I recently had my 3rd attack from Ménière’s disease and lost all my hearing in one ear severe tinnitus replaced my hearing it’s a catch 22 some PMR meds are not good for someone with menieres so I hope PMR gives me a break so I can concentrate on dealing with menieres hang in there and keep the faith that you will come out the other side!!!
Hello Myfoe, I'm sorry the recent booster effected you so severely. I had the first 4 Covid vaccines before developing PMR. I have been off Prednisone approx 6 months and was planning to get the new booster and a flu shot but am leery after reading some of the effects on this forum. Both my GP and rheumatologist discouraged me from getting any vaccines while on pred. I keep weighing the options as Covid could be life-threatening. If you had it to do again, would you get the booster?
Good luck to you, I hope you get the break you deserve so you can heal. Best, Kelly
Everyone is different. In my case I was totally incapacitated until diagnosed and started on 15 mg prednisone. Two years later I’m at 7.5 four days a week and 8 mg three times a week. Stiff in the morning but with minimal pain most days by two hours later.
Just went to a naturopath a week ago. Started on a powder capsule if non-hallucinatory mushrooms. It helped me add that 3rd and 4th day of 7.5 mg.
I teach therapeutic yoga three times a week. I think gentle yoga has kept me regain much flexibility.
I tried a keto diet for 3 months but it didn’t help.
Long hot baths seem to help.
A good attitude (which is sometimes really hard to maintain) goes a long way.
Hi All. Again thank you for your responses. This is day two of taking steroids early morning with some tea & toast as suggested. This time 4:00am. Got up around 9:00am arms and legs are about 90%. So at time of writing this 11:30 I am capable of taking the dog on its walk. Thanks again
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Awaiting definite diagnosis
How long does it take for the steroids to work?
Is it a Flare ?
If medications work, how do you know when you've got rid of PMR
Red cheeks?
