Hello all. I have been reading this forum a lot lately but now I feel I need some bespoke advice from all you knowledgable and kind people.
I was diagnosed with PMR in June 2020 and prescribed 15mg of prednisolone which worked within a couple of days. The first year and a half went pretty much as expected as I reduced steadily with jst a few problems with stiff muscles if I tried to walk any kind of distance eg half an hour. Around Christmas 2021/January 2022 I was down to 6mg and obviously my body found it a bit tougher but I took it steady and reduced in monthly intervals, usually feeling a bit rough for two weeks after dropping 1mg, levelling out for two weeks and then dropping again. By end of March dropped from 5 to 4mg (or was it 4 to 3mg I can't remember for sure), felt the back of my legs muscles get stiff on any activity and then early April got Covid. Not badly, and I rested a lot and upped my steroid dose by a few mgs for a week but I am guessing that I had created a perfect storm of challenge as I have not been the same since. I had very sore and stiff muscles all around my knee (back of calf, back of thigh, front above knee) with the end result that two months laster, my knee joint feels as though someone has hit it with a hammer. I also have other pains in my legs and the most minimal activity results in a flare up. I often can't walk around the house and the pain continues when I am in bed. I have reverted back to 6.5mg, intending to taper from there once I feel better. Ibuprofen gel doesn't help but tablets do relieve the pain a lot. I have been to two physios who have given me leg strengthening exercises which I do the best I can but they generally make things worse (persevering though) and gentle stretches as I feel that ultimately tight muscles are the culprit. The GP thinks it is osteoarthritis in the joint and I am waiting for Xrays on both knees but I don't, in my heart, think that is the problem (no history of knee probs, no grating feeling) but I am now at a loss. I have never had any musculo-skeletal thing that hasn't healed or at least improved over time and rest, but that is pre-PMR. I did pull my hamstring quite badly early on in the second summer but even that got steadily better over a couple of weeks.
I am not under a rheumatologist, just a series of GPs, and whilst I was happy self-managing my steroids until April, now I feel all at sea. The GPs I have seen know the proscribed course of action but don't seem to have much experience of people at my age with PMR (I am a 66 year old woman, pretty active prior to PMR), nor when it goes off piste as it has done. Same with the physios, limited experience.
I am not sure whether to try dramatically upping the dose for a week, say to 15mg to try and find out what is PMR and what isn't (the most dramatic toothache style pain I think is more a result of PMR rather than a symptom).
Does anyone have any thoughts or ideas as I am (a normally robust and resilient person) getting to the end of my tether as I can't currently see a way forward, although when I finally get the XRays that will help. Sorry for the long post!
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marionofnorwich
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"but don't seem to have much experience of people at my age with PMR" - what experience DO they have then? I'd say there are an awful lot of us in that sort of age range on the forum!
You aren't reducing relentlessly to zero - you are looking for the lowest effective dose and that may be where it went pear-shaped by you continuing with a reduction past the dose you really needed and causing a flare in the inflammation. That often results in it being more difficult to get things under control again - and no, no idea why, it is just so. Then you got Covid which has really poked at the immune system,
I wouldn't be surprised if you don't have a good going flare of the underlying cause of the PMR together with some effects of Long Covid, But it also so happens that I was asking Prof Sarah Mackie about this paper earlier
The abstract is a bit complex but I suspect that what is described there could be involved in your problems, it would fit with where your pain is. Not that a GP would "get" it I suspect!
Are you really in Norwich? Ask to be referred to Max Yates - brilliant and very curious rheumy who does research too.
Yes! I am in Norwich truly. I haven't heard of Max. The rheumy that a friend told me about is Karl Gaffney karlgaffney.co.uk/ but my GP says that they recommend primary care for first two years, and then a referral is possible but that then takes ages. the doc I saw a few weeks ago, post-Covid said that there was no point referring me as a consultant would just say it is post-covid but of course that is when I most needed advice! But I am going to push for a referral as I don't feel (especially having read a lot on this forum in the last few weeks) that I am bbest equipped to self manage. And I am going to email Max Yates (I have looked him up) and see if he can help me in any way at all - maybe I would make a good research subject! As for age, when I was first diagnosed they said that it was more expected in 80 year olds in care homes though I agree there are lots younger, and I think we will be seeing more post-Covid too. I will read the paper you linked to, thank you
What rubbish - you can be referred at ANY time and a lot of rheumies would love it to be them that sees you first!
"when I was first diagnosed they said that it was more expected in 80 year olds in care homes"
If that were true - how come the median age at diagnosis is 74? Have to be a lot of under 70s to get that figure! The age given in the guidelines is over 50. I'd go so far as to say your GPs are taking you for a right numpty ...
Longtimer will tell you all about Max Yates - she is under him.
I have read it (just about) and yes, I think it makes sense. If I could turn the clock back to 1st April (last reduction) when the backs of my legs felt a little bit tight, I would have done some stretches. I got Covid on 3 April, stayed in for two weeks and then on 23 April did a short walk around town (5 mins, 20 mins rest, 5 mins, 20 mins rest and so on over a two hour period) and then the muscular issues around my knee started, first top of calf, then behind the knee at the bottom of the large hamstring muscle, and then finally at the bottom of my quad above the knee which may well have resulted in the tendoniopathy mentioned in the article physio-pedia.com/Semimembra... . I have generally experienced that 20 minutes of exercise seems to result in stiffness that is more like doing 5 or 6 hours, although cycling was OK (haven't tried recently)
So I guess the question is what to do about it? I am tempted to increase the dose of pred to combat any PMR symptoms and isolate a more mechanical cause but sort of waiting for the Xrays too.
I really struggle with bursitis and probably tendonitis after more than 30 mins walking - can't do even that without painkillers at present. Very restricting!
yes, that is how it has been post-Christmas (and also post 5mg) but now I can't even walk around the house but that is a very specific painful point rather than the more generalised stiffness I have felt with PMR. I am hoping that a visit to a physio that uses ultrasound can help and I will send her the article on tendonopathy as well. How do people feel about massage? Is it generally helpful?
Depends on the massage therapist. I used it a lot until Covid when everything like that at our local hospital stopped. I have a lot of myofascial pain syndrome as part of my PMR and keeping the muscles out of spasm was very important in being pretty much pain-free. The Pain Clinic was also crucial. After 2 years of having neither - I seized up at the start of March. As a result I have horrendous bursitis in my left hip, it is there in the right.
Our physiotherapists who do massage here are VERY clued up on PMR but in the UK it is very variable. Here they are almost all athletes themselves and are very aware of therapeutic massage and muscle spasm - think tennis players being treated! They work on the MPS trigger points and soft tissue/bone attachments - it hurts at the time but and sometimes afterwards I don't mind as I know it will be beneficial. Less helpful for many I think is ordinary massage on large muscles - I've always had it and know what to expect but it can feel like a proper flare because it releases the inflammatory substances into the system - and you do often get a short-lived flare as a result. The massage therapist must be aware of the potential problems - and so must you! Lots of water and rest after the session helps but the massage therapist needs to go about things more gently initially until they work out what is good for you and what not.
Yes, pretty much why I have avoided it so far - combination of lockdown restrictions and also wary of inadvertently making things worse but I did have a half hour leg massage recently which seemed to be OK, not too deep. I have life-long poor circulation so I think anything that gets the blood and oxygen flowing must be good
I think if you know to expect what might feel like a flare it can be really useful. The other thing that kept me upright pre-pred was Bowen therapy but it needs to be a sensible and practical therapist like the two I had in the NE of England - not one who's being all esoteric and candles like I got here
Yes my friend has given me her acupuncturist's details. On Friday i have an appointment with a physio who can do ultrasound treatment so i hope that will help. Will try that first and then call the acupuncturist. Currently cant walk at all
Yes, I don't think I am too young t get it but it is often described as a condition for the elderly and I reckon I have 15-20 years before I consider myself elderly!
Well I certainly just had a senior moment. What do you do when you are just about to take your pred and the phone rings, you go and answer it and then can't remember whether you took the tablets or not? Double dose or none at all?
Get a dosette box and load it for a day/week at a time at a time of day that you are unlikely to be disturbed - before bed on Sunday maybe, then you have the tablets in a secure place and can see if they are gone or not.
Personally - at the very least half the dose and see how it goes maybe. If the aches start, take the other half.
yes, I am normally OK with it but just once in a while I confuse myself. But I will see how I go, my feeling is that I probably did. But to be honest, I feel so mixed up sensation-wise I am not really sure it will make any difference whether I took them or not!
Thats good to know - Marion I to am in Norwich, just past Coltishall actually - and I haven't been referred to a rheumy - thats what i am going to request on my next telephone appointment - good luck
Good luck to you too. It is good to know that there are other people nearby who understand this condition. I have at least spoken to a couple of people who have come out the other side
Can I ask, is Max Yates pro a slow tapering plan? After my threatening message at my last appointment with regard to tapering and Actemra, I am thinking of asking to be referred elsewhere. Norfolk is about 90 minutes for me which I am more than happy to do if I am going to the right person. I was wondering about whether to book a private appt with him and see what he thinks. My GP seemed to think that she couldn't refer me to a specific person only the hospital department, so that would be pointless if I end up with the wrong consultant. I might as well keep the useless one I have and just avoid her, she doesn't seem to notice most of the time anyway.
Ask Longtimer, not me. But he was part of meeting the other day where we were banging on about long PMR and slow tapering ... Don't know of he does private - he's research, You CAN ask to be referred to a named consultant - it often works
As for GPs, mostly I have felt better informed than they are although my practice is quite good and has given me several face to face appointments recently - but yes, I am going to insist on a referral now.
I have a feeling that I have had an adrenal insufficiency for a long time, following menopause when I would often get a weird feeling just below my breastbone which I have never been able to explain to anyone. It disappeared with HRT and now when I still get it occasionally, I take an HRT tablet and it goes, though I haven't taken HRT regularly for a few years now. I wonder if the two (PMR and that feeling) are linked
I got pmr at 74; was on hrt 6 years until age 57. Ended up with bilateral breast ca. Needed hysterectomy to for precancerous issue there.At 70 almost died from twisted bowel; never been right until I got PMR after getting pneumonia vaccine and flu vaccine same time.
I am amazed that you have got down to that level dose reducing at 1mg a month with no problems until now. I reduced at 0.5mg a month below 10mg and that was hard. When you get to 4mg a 1mg reduction is 25%. If you have problems a rule of thumb is to increase by 5mg to hit the PMR on the head and then reduce again after a week or so. It may be better to reduce in two steps.
I did listen to my body and only reduced if I felt OK. It sometimes took 6 weeks as I didn't do it by timetable. I would have probably gone slower but didn't find this forum until I started having problems earlier this year, by then too lat - well hopefully not too late to take advice
Very odd. I was diagnosed at age 58 last year (during the Covid crisis). My GP was certain I had PMR but still referred me to Rheumatology on an urgent basis and I was seen by them within a month.
I got down to 4mg and flared. I put mine up to 9mg with the intention of dropping back to 5mg after a couple of weeks. This was impossible and I am now reducing slowly and on 7.5mg hoping to get to 5mg in a few months and will stay there for a while
Hi. If you are two years in on your PMR journey and are having problems that's a jolly good reason for your GP to refer you to a specialist.
Can I ask if you're taking ibuprofen tablets to relieve your pain? If you are you should know that ibuprofen is not recommended alongside Prednisolone as stomach problems may result. Have a word with your GP or pharmacist.
I saw a physiotherapist when I no longer had pain after some weeks of starting steroids and she was very knowledgable in PMR: that knowledge is essential to avoid inflaming already stressed muscles. Perhaps the physios you saw pushed you too hard????
It's horrible when you can't see a way forward but I'm sure things will improve for you with a good rheumatologist who will enable you to feel more positive. Good luck!
Thanks 123-go. Yes aware of contraindication of ibuprofen so also got cocodamol which isn't as effective but I only take either when desperate and not every 4 hours as prescribed. However I think the fact that ibuprofen works is a sign of inflammation ref knee. Ever since I started with PMR I have had bad response to exercises, even mild so I have not pushed myself with physio instructions (he didn't do anything but I have exercises via an app to complete every other day) but that was only recently, not at the start. Cycling has been the best option, walking the least. Did a little bit of gentle table tennis but that had a repercussion but need to keep active somehow!
My rheumy uses ibuprofen or another NSAID alongside pred BUT insists I take stomach protection - a PPI (omeprzole or the like) or famotidine. Other painkillers do nothing in PMR because they don't have the antiinflammatory effect.
Yes i do have a stomach protector, Lansoprozole, also i rarely take more than two in a day, and not most days. Question now is whether to increase pred dose to 10 or more to see what happens. Am tempted to go back to 15 for a week to separate PMR from other issues
I would! Think own intuition often works the best. Only problem I would have would be getting the tablets. My present GP counts them almost to the minute. Good luck 🤞
That doesn't seem to be a problem. I am left to pretty much manage on my own with occasional phone calls and order my own meds. They currently think I am taking 9mg a day anyway so I am always in credit!
Can you not arrange a private consultation? You get seen pretty speedily and then usually have the option to transfer back to NHS, I’ve (probably unfairly) used this method to cut waiting times with a couple of different specialists over the years.
I can order medication etc by the online app, as well as see my test results etc. Probably can also log my request that way. I have found that my notes are often erroneous though, taken down incorrectly and giving the wrong impression which is frustrating. So I think if I write it all out it will at least be accurate
I struggled with painful legs and struggled to walk for more than 20 minutes - very frustrating. And genuinely thought it would never get better. However now I'm into my fourth year of PMR this has improved - can now walk up stairs and hills much easier and feel I'm getting stronger and less fatigued day by day . I think it's easy for us to think we can speed up getting rid of PMR/off steroids by e.g. doing more exercise but acceptance that PMR will only go in it's own time is a great leveller
So well said , I was one of these that thought I could rush getting better, I have now learnt from this fantastic site that a lot of acceptance and patience is needed, getting there very slowly .!
I know exactly how you feel, all the symptoms you are talking about started with me 6 months into taking pred ! The pain was horrendous , it took me a while to click that it was the pred. I did a lot of research into it . Ive been on pred a long time and it took me ages to ease the pain. Stretching is the way to go, i have stretch bands and do a very gentle You tube work out. My calfs can still be very tender. You can feel a difference as your dose drops ! It was agony i hobbled everywhere ! Googled it , it will amaze you what this drug can do. Im on a slow taper off it and even though it will take as long as it takes, i cant wait !! Good luck 🌷
The fact that the ibiprofen is helping your pain suggests it is not PMR flaring but something else going on. I would want the results of those xrays for starters and then a follow up to discuss what other things it could be. If it really is PMR related then you may not have gone up high enough on yiur dose to handle the covid response.
Thanks Pawscat11. I think that the pain in my knee is a byproduct of PMR rather than a symptom - that is, I think what happened is that tight PMR muscles in my leg (aggravated by Covid flare) have resulted in a stress on my knee joint or ligament which is now aggravated. I also have an uncomfortable feeling across the back of my neck and shoulders which I think is PMR but it is bearable, low-level and just a bit wearing. Same in my arms and lower legs. Strangely hips and thighs seem ok but I can feel that they are tight and vulnerable to 'pinging' or cramping. I can't wait (but have to!) for the Xrays as that will give some guidance. Did you go up to 10mg and stay there after Covid? That is what I am considering. I took 10mg for a few days just to see what would happen but then came back to 7mg and then 6.5mg where I am now
My only comment from personal experience is I would certainly describe my PMR pain as like a toothache pain but in my legs and arms whereas other problems I have the pain is very different. It may help you work out which is which. After Covid I needed to go up by 10Mg for a few days and still am having problems 11 months later and not back where I had got down to yet.
Hi MarionofnorwichPrior to my diagnosis of PMR in September 2021, I have been living with severe osteoarthritis in both the knees. It’s due to sporting injuries over 40 years. As I can remember prior to 2012, I would have had great difficulty in walking even a quarter of a km. my knees would swell and would be in pain. I referred myself to the Physician at occupational health in Dublin, where I worked. He recommended that I should try taking Chondromax( formulation of glucosamine and chondroitin ) from Healthspan.co.uk.
I have been taking 2tablets for the last 9years or so, and it has made such a difference. I could walk on a regular basis over 1.5km without any aches/pains or swelling at the joints.
I was due have an op to replace the left knee in October 2021’ ( was on prednisolone 20mg)but with consultation with my knowledgeable GP, I cancelled the knee replacement operation.Looking back, I have no regrets with the decision. I am still walking.
At present, I have managed to taper my prednisolone medication to 1.5mg without any symptoms of PMR.
That sounds great bgchess I have never had problems with my knees before the beginning of April, in spite of playing sport - or maybe because of playing so I am doubting a prediction of osteoarthritis and not keen on any kind of op - I have heard that they can go wrong too. I'll try the glucosamine and chondroitin. You have done well with the pred taper by the sounds of it
I had torn cartilage removed ( left knee)in December 1981, Epsom , Surrey.Over the years, I continued with sports and overused the right knee. I had numerous MRI scans and knee wash outs over the years.
My knees are now bone on bone. My Consultant Orthopaedic surgeon is somewhat amazed by my mobility. I am too reluctant to have knee replacements as the thoughts of inserting plastic and metal pieces is off putting.
I guess the Chondromax supplements have helped me, and I am still taking them.
I hope I am on the right path of reducing my prednisolone.So far so good, with bloods results indicating no inflammation.
It sounds as though you have given your knees a hard time bgchess. I have never had knee probs before. I did have a hip problem a few years ago. Suspected OA but turned out to be tight muscles. Think this is similar somehow.
Sorry to hear you are having such struggles without the guidance and direction of a medical specialist (rheumy) or your existing GP. Sounds like a flare was “cooking” and that your last dosage drop was too much and now you’re dealing with the fallout.
I will say my PMR actually started in my knees and the tendons and muscles around them. I did not know the extent of the organic issues with both knees until I got PMR and my GP investigated further with X-rays and MRI’s of both. Low and behold I had OA (worse in right knee), bakers cysts, and every type of meniscal tear there is between the two of them. Was slated for a knee replacement and had a few Medrol injections in right knee while waiting, lost weight, and the pain stopped.
All this to say, for me, my PMR when it flares starts in my knees and one spot in my neck. There was great debate between my ortho surgeon and 1st rheumy about PMR impacting knees (ortho surgeon said it can). If you’re being cared for by someone who thinks there is no connection, they will investigate based on it being something other than PMR. In the end I am impacted by both existing conditions and PMR. Like you, when I flare, I suffer terribly with my knees and I feel the sharp pain of bone-on-bone and all the tendons and surrounding muscles hurt.
I would suggest requesting an MRI of your knees in addition to X-rays as it will help sort out what is what. Also an increase in pred may be called called for, with an eventual slower taper by .5mg. Those early aches could well be warning signs that you’ve reached a point where lowering further will result in a flare. You will learn to listen to your body/symptoms, but be patient with yourself as this was your first taper which was done basically on your own without much guidance from your GP.
Lastly I hope you get the current pain under control. It is wearing to deal with chronic pain as it affects our mindset, sleep/rest, etc. We are hear for you so feel free to post your questions anytime.
I have suffered from PMR for about the length of time you have and my ‘journey’ has been similar to yours, but without the covid (so far). For all of us there is this issue ‘is it a flare or is it withdrawal from Pred?’ I am currently at 3 ml of Pred a day, having been up and down a bit along the way. I have sore legs, hips and back pain most days (and sometimes terribly sore legs, hips and back pain) and some shoulder pain, but I do too much, I know I do! I recently read ‘Coping with Prednisolone’ by Eugenia Zukerman and Julie R. Ingelfinger. The book is about Eugenia who suffers with a lung condition and took Prenisolone for a lengthy period of time and had awful withdrawal symptoms, including debilitating pains in her limbs that sound just like PMR symptoms, although she never had PMR. Reading more about withdrawal from long term Pred I discovered that these are common symptoms. I am not saying we should just slog through it, but in a way I think we have to in some respects, but with care and attention to much worse symptoms, ie GCA symptoms. It is human nature to start to feel better and not heed the warnings that we are actually still Ill, or at least battling with withdrawal. I have a good GP with no time to spend learning about PMR, or anything else in fact. I have a Rheumatologist who is only interested in me coming off the Pred in the quickest possible time and wants me to take other drugs to help me do this and many other drugs to ‘support’’ the taking and cutting down of other drugs. She only has drugs to offer me and I understand that, but I know that the answer is to change my lifestyle, to say no to people I have always said yes to, to have respect for this awful illness and the only drugs available to manage it. I follow the Dorset Lady tapering method and I am going to try and rest more and look after myself, do the things that I can do and not the things that I used to, in the hope that one day I can again. I have no answers and I may be wrong, but my instinct is that time, patience and self care is the way forward.
I am just reading a book called Recovery : The Lost Art of Convalescence by Dr Gavin Francis, a GP in Edinburgh. It is a small book which reminds us about what we already know deep-down, ie that sometimes we need to step back from normality and give ourselves time to recuperate from something that happens. It is much easier when we can see a pathway eg for a physical injury, we have some idea about how long it will take to heal but this is much more random. For me, being a robust, resilient and energetic 'doer' is essential to the core of my being so it is hard to think of myself as an invalid. Nor do I think we should become victims of the circumstances we find ourselves in, but rather find ways of being active but at the same time listening to our bodies. That is how I have coped so far but I am reluctant to give in to the idea of being a disabled person who can't join in with life appropriate to my age. Which is why my current state of not being able even to walk comfortably to the other side of the room is a bit hard to take. Realising that I need to treat this physical condition in the same way as a more conventional illness and give it time, but finding it confusing as not sure what is causing what and that makes my practical brain annoyed!
Thank you PMRCanada. Thanks for your reply. I was told that i cant be referred for an MRI till xray has been done and excluded osteo-arthritis. I must admit i am regretting asking fir Xrays as otherwise i think i would have gone to A&E by now. I do think it was a perfect storm of lowering the dose and getting Covid before my system adapted. Whether it was a flare or not, i dont know but my problems have really all been since then. At least, before that they were manageable. I dont get any grating feeling in my knee but just a collapsing pain with forward motion to the inside of my knee. I can drive ok and even stand on one leg ( the bad one) but walking no. Luckily i am quite resilient and also i sleep well whatever so am lucky in that respect
Hi marionofnorwich. Your story is a little familiar with my PMR, although I was diagnosed in March of that same year and I too was put on 15mg to start but I’ve had a couple of attempts at slow tapering, currently on 5mg and have been there quite some time (I didn’t want to start going any lower as I had other things to contend with and we’re going abroad for 2 weeks on Wednesday).
A lot more knowledgeable people on here will be better off advising you, but from my experience I’ve had to really up my dosage for a few days if I’ve had any problems and then reverting back to a low dose again.
An update to say that I have been in touch with Max Yates who kindly replied to me over the bank holiday weekend. I have also been referred to the rheumatology service at Norfolk & Norwich hospital but I am trying to ensure that they link up with Max and not someone else. Meanwhile, all else remains pretty much the same so just trying to be patient and upped the pred dose to 7mg from 6.5 to see if that helps
Thanks PMRpro and thanks for the tip-off as I can try and make sure now from both ends. I am trying to get Max's secretary to pick up the referral at the hospital end as I think I may be just in time to prevent a random allocation - as you say, fingers crossed!
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