As soon as I was diagnosed with PMR I concentrated all my spare time into reading everything I could find on the subject. I became totally immersed for three weeks and at the end decided I would put all the information into a short, ordered, easy to read form. This was not only to allow me to get a clear picture of exactly what I was dealing with but also to help my family understand the reasons for any changes I was having to make to my normal activities etc. Please bear in mind that I hadn’t heard of PMR three weeks before putting this summary together: some of the details may be debatable but hopefully the overall picture is correct. Hope it's useful.
Polymyalgia Rheumatica (PMR) Summary
Overview:
• PMR is an inflammatory condition primarily affecting adults over 50 with the highest incidence occurring in people aged 70-80. Women are affected about 2-3 times more frequently than men. It causes pain and stiffness in the shoulders, neck, and hips and symptoms develop quickly and often worsen in the morning. The exact cause is unknown but involves immune system dysfunction and inflammation, with genetics (PMR is more common in people of Northern European descent) and environmental factors playing a role; possible environmental triggers are viruses, vaccines, stress.
Inflammation in PMR:
• PMR involves chronic inflammation of synovial tissues, bursae, and periarticular structures, driven by immune system dysfunction and elevated inflammatory cytokines. Left untreated, inflammation can lead to significant pain, stiffness, muscle weakness, and overlap with giant cell arteritis (GCA), which can cause serious complications like vision loss.
Diagnosis:
• Diagnosis is based on symptoms, blood tests (elevated ESR/CRP), ruling out similar conditions like rheumatoid arthritis, positive response to steroid treatment.
Prognosis:
• The condition resolves naturally: Within 1-5 years is said to be usual but exceptions seem to be fairly common. Steroids manage symptoms during this time. Relapses are common. With treatment, symptoms can be effectively controlled, and complications minimized.
Treatment:
• Corticosteroids (prednisone/prednisolone) are the primary treatment, rapidly relieving symptoms by reducing inflammation.
• Corticosteroids do not cure PMR but manage symptoms until the disease resolves naturally. Without treatment, PMR symptoms can significantly affect quality of life which can lead to other health problems.
• Prednisolone is effective in the reduction of inflammation in PMR but it also mimics cortisol, and when taken in sufficient doses over an extended period, it suppresses the hypothalamic-pituitary-adrenal (HPA) axis signalling the body to reduce or stop its own cortisol production and leading to adrenal atrophy, where the adrenal glands shrink due to lack of use.
• Full recovery of adrenal function can take weeks to months after stopping prednisolone. If prednisolone is tapered too quickly the adrenal glands cannot recover fast enough to start producing sufficient cortisol to counteract the reduction in prednisolone. This can cause fatigue, weakness, low blood pressure, and in severe cases, an adrenal crisis which can be fatal.
• To manage this, prednisolone needs to be tapered gradually. During stress (e.g. illness or surgery), additional prednisolone may be required.
• Key points of treatment for PMR patients include gradual tapering, monitoring for symptoms of adrenal insufficiency and adjusting doses during stress. Proper management minimizes risks while controlling PMR symptoms effectively.
Self-Management:
• Follow medical treatment and taper steroids as instructed by a COMPETENT PRACTITIONER.
• Adopt a healthy lifestyle with anti-inflammatory foods, regular exercise, and stress management. Avoid smoking and alcohol
• Protect bone health with calcium, vitamin D, vitamin K2 and Omega 3 supplements.
• Stay active but avoid overexertion. Avoid repetitive exercises. Walking is a particularly good exercise.
Key Points:
• PMR is self-limiting but in the meantime will require corticosteroids for effective symptom control.
• Lifestyle changes and regular medical monitoring can support recovery and minimize steroid side effects.
Written by
CocoaChanel
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Thanks, that is great - it would be nice if you could add a bit to the beginning saying how you compiled this so it comes in the context of your experiences.
Ah well, HU has its moments too! It really isn't always that clear how to do things. Probably designed by 12 year olds who were born with a computer in their cradle!!!
Seems pretty good to me. The only point I would add is in your prognosis. PMR doesn’t always resolve naturally within 1 to 5 years. I was on steroids for seven and three quarter years, and there are several on this Forum, who are having treatment much longer than that..
You could add “ usually, but not always” just a suggestion.
I'd say if I heard usually I would assume most people would fall inside that range - where not always implies that a significant number don't. But probably that is also pedancy ...
Not fussed about the semantics! All I was trying to say was that PMR can actually last longer than five years, and does, so perhaps this should be made clear.
I agree. As well what stood out to me were 3 things. 1st what Charlie said. As well my symptoms took a year to get full blown. They don't necessarily but can start overnight. 2nd it can also affect other body parts. Many of us it effected our hands some of us feet. As well not always bilateral.
3rd many of us, our pain was excruciating during the night into the morning prior to diagnosis.
I totally agree. However if she's wanting this for families I would totally include the exhaustion. It took my husband close to 2 yrs to understand how I could do something one minute and then turn around and need rest.There is something I believe on this site if not pmrpro will remember the store about so many of something in your daily basket, stones, pennies, and that's your energy for the day. Getting dressed could need 2 pennies. Everything has value and you can run out fast.
I really wish she comes online and posts it. It is wonderful. It can help explain things.
I use to read these comments to my husband hoping he would get it. Sometimes I think he thought I was making things up.
Due to this forum I found a fellow pmr suffer who lived close. He and I would meet up which was great for our soles.
Low and behold 3 or 4 yrs later we find out he went to school with my husband. My husband was just getting some of the guys together so he joined.
Not average - the median time to get off pred altogether is 5,95 years, that is, half of all patients need pred for up to 6 years. Which means half of patients need it for longer ...
It would be more than nice to think that PMR/GCA is as clear cut as the summary you have put together for family information but one could take issue with a number of the generalities you quote. The FAQ's A-Z 's try to address the myriad of nuances that need to be considered to navigate this weird condition that does not fit at all neatly into the medical model of the majority of non autoimmune illnesses. 🎄
Yes, I agree with you, there are lots of nuances as you say. My aim in putting this together was to cut out all the ‘noise’ so that I could get a clear picture of the basics. I also worked to reducing the info onto one sheet of A4 for my family (not by cutting down on info, just by condensing it as much as possible and using smallest typeface still comfortable to read) as no one not personally affected is going to want to read reams of paper full of ifs, buts and maybes. This exercise was purely meant to be a broad overview. I think I would have found it immensely helpful at the very beginning when I was totally bewildered, shocked and frightened and trying to understand what was happening to me.
Once I found this site and your intro post, it was great and very useful and much appreciated . It is far more detailed than my condensed summary so I would say invaluable once you have a basic understanding. A place for both?
I think both have a place - but DL's post is essential reading for the longer term as it answers many of the questions that arise from the basic outline yours provides. And they are many and varied!!!!
I dont think so. Basic info is widely available across all the major websites. As the dust settled after diagnosis I found the detailed version invaluable.
As I say - I see this outline as a starter for people blinded by the masses of basic and contradictory info that they find when they start. And it has already been collated so they have an outline - to offer to family and friends as well. I don't see it as a replacement for DL's post. More like a title page with chapters ...
Great info — thanks! My research shows it’s often a lifelong chronic illness with flares, other pain medicines are ineffective, and that there are several other cortisone-sparing meds that can be tried by a rheumatologist (approved in many countries).
Spot on. The only advice I would give is make sure you have a competent practitioner, and don’t be rushed into getting off steroids in what many believe is a two year journey!
Yes, you’re so right. Landing on a competent practitioner is so hit and miss. In my original copy I have lots of points highlighted in bold but can’t do that in posts here. Capital letters?
I’m scared as to when to come off my 0.25 mg taper of which I have been down to from 0.5mg for just 2 full weeks now, having spent 4 weeks on that taper down.
Thanks - terrific! I am coming up to 5 years, so let's hope! On 8 mgs now, but was down to 4 mgs 1.5 years ago. I think I can have another super-slow go at it. Good luck!
perseverance - I had 3 GP's in the same practice advising me until I found one that listened and he's the only one I now see. I am told by a friend who had similar problems that there is one more in the practice out of 10~14. That's my reserve.
If they are that keen - I'd recommend Kate Gilbert's book. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. It also comes as an e-book for Kindle.
Thanks CocoaChanel for a well thought out article of advice. Always good to read perspectives from many varied sources.Your efforts are appreciated, thank you again.
Thank you for this, I have saved it to refer back to.
What puzzles me is: I understand that chronic inflammation causes the PMR which is managed by the prednisolone but how do you know when the chronic inflammation is gone so that you taper off the Prednisolone to reactivate the adrenal glands?
Or is the idea that you never know if the inflammation has gone but begin tapering and if the pain comes back, return to the dose when it was under control and then start again another time but after how long?
The daily shed of inflammation is produced all the time you have PMR All you are doing after dealing with the original inflammation that has built up pre diagnosis and for which you need a high amount of Pred… is to reduce in a timely manner to find the dose that give you same relief as the initial dose did. That continues for as long as you have PMR, and in theory [although not always in practice]as your PMR diminishes you should need a lower dose.
Once you get to the physiological dose of Pred [ie approximately the same amount your own adrenals would work at] the the adrenals will start working again.
No one can tell you
a. How long you PMR will run, nor
b. How quickly your adrenals will recover, plus
c. You are unlikely to know if/when your PMR has gone into remission until a few months after you have finished the medication and no symptoms return.
Thank you, I have located the FAQs and that will be my first port of call in future. I've understood now that the inflammation reduces little by little and as that happens that is the opportunity to reduce the medication little by little. I also have an inflammatory bowel disease which must have been affecting my adrenals and I imagine the added stress of compression fractures has not helped. If I could turn my glass half empty into a glass half full that would help too. Please can you tell me how I get back to your introductory post so I can read again. Thank you for you patience. It must be frustrating repeating the same think over and over.
which you get to from your avatar on the strip at the top of the page or any of your comments, just click on the avatar/name.
It can be frustrating and it is why we developed the FAQs to answer the basic stuff - but if you are struggling, just ask again. You will get the hang eventually!
Perfect sense - but the answer is covered in the introductory post you got.
"Or is the idea that you never know if the inflammation has gone but begin tapering and if the pain comes back, return to the dose when it was under control and then start again another time but after how long?"
Just above covers it - you always start at a dose that should be higher than you will need ongoing. Once the built up inflammation has been controlled you taper to find the lowest effective dose, the lowest dose that gives the same level of symptom control. It is a process called titration - you taper until the dose isn't quite enough and go back the dose that was enough. Over time that usually gets lower - but you can't predict it or know, whatever some doctors will try to tell you.
I think this is for someone with more experience to answer. I’m foreseeing that it will be trial and error - as soon as I feel a twinge I’m thinking I will need to adjust my dose up until the pain goes again and then continue tapering. I’m also thinking of yo-yoing at the start of each new period of tapering until sure I’m pain free. I’m frustrated at the moment trying to get through to my GP to prescribe 1mg tablets so I can play with the doses. At the moment I’ve only got 5mg tablets so my only options are going up or down in 2.5mg (not very accurate) steps. Would be interested to see what other think about this.
Yes, I think I need to ask for some 1mg tablets. I managed to get some 2.5mg tablets as my GP only gave me 5mg tablets so my first attempt at tapering didn't work. He didn't know they came in smaller doses.
My own attitude to twinges is to sit tight, take a Paracetamol and see if they dissappear, which they often do. Ordinary muscle aches are common with PMR cos the muscles are poorly. Otherwise one ends up upping the dose unnecessarily. On the whole I have found yo-yo ing to be avoided at all costs if possible; messes with ones head and is depressing because I havent found that it works. A good pill cutter will quarter a 5mg or a 1mg tablet pretty satisfactorily when I reduce my dose.
I try not to act on the basis of twinges (I get plenty of those anyway with arthritis etc), and like you take paracetamol (also codeine and ibuprofen gel prescribed by my GP).
If the pain continues to increase over several days, however, and can’t be attributed to DOMS from a specific activity, then up goes the pred again (depressing, ye, but sometimes necessary) x
Well it shouldn’t be really be too much ‘trial and error’ - but try to get a sensible tapering regime going on 5mg is extremely difficult… you do require 1mg - and your GP needs to prescribe them. Having read your profile and previous posts, it does sound as if you and/or your GP are trying to to rush things along -it’s very early days - and the priority is to get PMR under control from the get go. Not sure yours is…
What do you mean by -I’m also thinking of yo-yoing at the start of each new period of tapering until sure I’m pain free. That’s not a good idea, you need to taper more steadily - yo-yoing just makes the whole thing more difficult.
I know it’s early days, but you will learn what is steroid withdrawal symptoms and what may be the start of a flare just after a reduction-one needs time, one needs action - see this
If you are still having difficulties in getting 1mg Pred - although you shouldn’t- you can cut the 5mg into quarters- may have done so and/or try one of the slower tapering plans. Some countries don’t have smaller doses and this is one of the reasons they were devised.
I think you have the wrong impression from my posts. My GP gave me a schedule of 3 weeks at 15mg, 3 weeks at 12.5, 6 weeks at 10, then 6 weeks each at 9,8,7……. I calculate that to get straight to 0 without any hiccups would take 14 months but I am fully prepared for it taking longer. Since I didn’t have any underlying conditions and am following all the dietary and lifestyle recommendations I am hopeful but not blindly optimistic
I look at the schedule as a guide only. I have no intention of following it religiously. I completed the first 3 weeks of 15mg pain free. The first 2 days on 12.5 were fine but on third night I woke up in pain in my left groin area ( my weak point I think) so took 15mg that day. Now back to second day on 12.5mg - no pain so far. That is what I mean by yo-yoing. I intend to listen to my body and go with my instincts and adjust as I feel necessary.
Re. the doses of pred I don’t really understand why the drop in the initial doses is so big - 2.5mg at a time. If there is pain at 12.5 why not try 13 or 14? That is why I’m trying to get an early prescription for 1mg doses. My problem is getting the request through to the doctor but I have now written her one of my famous letters (family joke) so 🤞.
Re splitting the 5mg pills, my pills are tiny and it’s already difficult to split them in half evenly so I envisage quartering ending up as dust.
Re. the doses of pred I don’t really understand why the drop in the initial doses is so big - 2.5mg at a time. If there is pain at 12.5 why not try 13 or 14? That is why I’m trying to get an early prescription for 1mg doses.
Because it’s what is suggested in virtually all guidelines … and the thinking behind it is that the starting dose [ie 15mg] is sufficient to get the built up inflammation under control…once that has happened, then a smaller dose is enough to manage the daily shed of inflammation.
That may work in theory, and for some patients it does, but as we know it doesn’t for all… and we often suggest the 1mg reductions.
We also constantly say the guidelines are just that…. Unfortunately some doctors think they are set in stone… and don’t seem to realise that we aren’t all model patients and that life has a habit of knocking the best laid plans into a cocked hat. Some of us have been on this forum for a very long time, and see the same issues time and time again..my tapering [GCA] was straightforward, but it still took a lot longer than the plan given to me at outset.
As time goes by you will be able to differentiate between steroid withdrawal [which I would suggest you had] and a flare - as per my link above..
Your plan below 10mg does sound more sensible than many, but please view the anticipated end date as just that… as I said life very often intervenes [no matter how well you think you can manage your PMR] and the illness has the final say.
"I look at the schedule as a guide only. I have no intention of following it religiously"
Possibly not - but you will come across doctors at all levels who think you should. One claims to be an expert in GCA but is absolutely set on HIS taper orders and no deviation is allowed.
What can he do if you do deviate - refuse to treat you? One of the perks of getting older is having the confidence to listen to others but then act according to your own informed opinions. Have to admit I do secretly enjoy standing my ground and saying no sometimes. Irritates me to be talked to like a 2 year old just because I’ve got wrinkles ☹️
It is certainly threatened by some. But you end up with a very unpleasant atmosphere even if they do continue to manage you. If you refuse to try DMARDs some will just send you back to the GP on the grounds "we can't do any more for you". Luckily, there is a new study showing MTX doesn't make a significant difference in PMR. However, MTX can have a very good result in a few patients - probably who have been misdiagnosed so it can be worth trying. The primary problem is the lack of definitive diagnosis. Even in GCA, the ultrasound and biopsy can't give 100% certainty - if they are positive, yes, it is GCA but if the artery looked at isn't involved, you get a false negative. The biopsy is particularly dodgy but too many doctors take it as gospel. So are the blood markers.
But the crucial point is, what is informed opinion?
So do I!! But unfortunately there are a lot of arrogant doctors who think patients know nothing and it does help to understand the medical speak and have read the relevant papers, So many are so technical even THEY don't really understand and many are not available to us as they are increasingly behind paywalls.
Some brands are crumblier than others. The 1 mg pills I use at the moment most days turn into a neat half and a pile of crumbs! I do not recommend quartering them unless they split into neat halves consistently. I do have a good pill cutter BTW.
A very valuable lesson here. I gradually tapered and finally stopped prednisolone in June, however I have recently had blood tests and lab results say likely thyroid autoimmune disease, yet to see dr about this January9th, on a phone call he said serum alkaline phosphate levels are 10 times what they should be - I.e 57 instead of 5.5 or below. I am totally confused, I am wondering if any of this is connected to PMR , any answers would be helpful.
I know it is easy for me to say but there is no point worrying about it until they find something to worry about! Bit mean making you wait until after Christmas for explanations - but that does suggest they aren't that worried, that is a month so they probably aren't setting you off on a cancer pathway.
Thank you for your reply, I always value your opinion, I have looked up the data written by clinicians and I can see the link. So hopefully the doctor will find this to be the case.
Hi CocoaChanel.I recently met a gentleman who was in shock having been diagnosed with PMR. Your article would have been ideal for him. He had just seen his radiologist and was fully expecting to be "better " in 2 years. I did not feel good about telling him I am in my 8th year now. The expert also told him not to look at websites like this one !! Good luck and thank you for your hard work in putting together a very helpful article.
Would he tell patients not to look at the Diabetes UK site? Mind you - we warn people not to look at the FB versions except the charity one. Not that I have ever looked at it!!!
Ahh, but this one is not just ‘any website’ .. it’s monitored and managed correctly by the charity and others who have been on here a long time…We can sort the wheat from the chaff!.. and act accordingly.. Thats the difference…
Just thought I’d share my experience with PMR- I started with some pain on calves August 2020 that got progressively worse. By October I was with much pain in bending and going up and down stairs. Getting in and out of vehicles was difficult.
I found out my Vitamin D level was 18 but despite supplements my pain increased and I could not move without excruciating pain. By Nov I ended up at emergency and I was given the diagnosis. I was in denial and took Nurofen instead of the prescribed prednisone which provided relief only for a couple of weeks. So I started on 20mg of prednisone which brought amazing instant relief by the 1st of December.
However like you I researched everything I could and I found out that within the first month one could taper without risking adrenal crisis. So I experimented and I tapered to 10mg by mid December.
During this time I also changed diet and took various supplements. Plus I had acupuncture. By before Xmas I tapered to 2.5 mg but unfortunately I drank alcohol and consumed carbs more than usual during Xmas and I had to increase the prednisone to 5mg by New Year. So I stayed at 5mg. After switching acupuncturist I managed to get to 3mg by September 2021 and slowly I weaned off prednisone by May 2022.
In those early days I had chanced upon the experiences of 2 or 3 that had gone down the path of tapering fast straight away so I tried it and it worked for me.
During September 2021 and early 2022 it wasn’t smooth sailing and there were a couple of times that I increased dosage for 2 or 3 days straight and then tapered back to my low dosage and it worked. Some ethos that I tried to follow also helped tremendously: find joy every day in someone or something & show up to yourself with courage, curiosity and self compassion. That last one guided me with tapering. All the best.
do you have the reference for this (below)? I keep hearing/reading that PMR’s target is primarily muscular (hence the polymyalgia). And even specialists insist that bursitis & tendinitis in both hips and a shoulder are unrelated to PMR. Would be great to have a reference if this might be caused by PMR (and maybe avoid unnecessary hip surgery??). Thanks!!
‘PMR involves chronic inflammation of synovial tissues, bursae, and periarticular structures, driven by immune system dysfunction and elevated inflammatory cytokines. ’
"And even specialists insist that bursitis & tendinitis in both hips and a shoulder are unrelated to PMR" - they may not be in some cases, but they really can be so they shouldn't rule it out and should read up on PET-CT in PMR
This is great and useful for family members too. Is it possible to include this (with all amendments) in a link ? Thanks for taking the time to put this together.
It may be considered- but you can always save it - and then you’ll have it to hand, and will get notified on any further responses. If you are unsure - this explains -
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To save a post - tap "Save Post" box - directly under post - will change to "Saved". You can also unsave a post if you wish… the button acts as a toggle button, so just tap it and it will return to “Save Post”.
To retrieve - tap Home - top left in banner, takes you to new screen which gives options - News Feed, Explore and Saved, tap "Saved" and hey presto there it is /they are.
You will also be advised of any new replies provided you have selected that option in your email notifications - see profile (avatar) top right of screen
When you receive email notification- there’s a See all my Saved Posts> link written in blue to access them
have a wonderful Christmas with your daughter and family, so good to have you on this platform, a special lady, dedicated to giving advice, so thank you. Enjoy your holiday.
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