Hi I am new here. From the uk . I’ve been diagnosed with PMR by a Locum GP this August after struggling with symptoms that started in January . . I was sent off with too months prednisone but not much info and no plan or follow up . I wasn’t confident taking it after researching and learning about tapering .
I am 59 and fit and active no other health issues .
my inflammation markers are 4 .
I am desperately trying to manage the pain with diet and excercise and I am having some good results, though I still get bad days .
I would really like to connect with someone that has the same approach .
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Louisearmi
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Over the years we have seen many posts in a similar vein - and whilst diet and exercise can help - you do have to realise the implications that prolonged uncontrolled inflammation may/can have on your body.
Many refuse steroids at the beginning of their journey, but find that after trying other methods of controlling the symptoms including diet, supplements, alternative therapies have to eventually admit defeat and go down the route of Pred. None of us WANT to take Pred, but invariably it’s the only option.
I’m sure in days of yore many went through PMR or GCA without Pred because they just weren’t diagnosed, but I doubt if life was very pleasant for them.
Plus you have to remember that if your inflammation is not controlled properly it can lead to many other issues including GCA - a much more serious illness. GCA left untreated can lead to aneurysms or, more commonly, sight loss.
We have a few patients who have lost complete sight, and I personally lost sight in one eye because GCA was undiagnosed so no Pred for 18months.
On diagnosis in hospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye.
I took that first dose of Pred as fast as I could! Plus I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that experience.
I do not intend to scare, but I do say, think very carefully before you reject Pred. Yes there are plenty of unpleasant side effects, but most can be managed. I started at 80mg and it took me 4&half years to get to zero. I did have slightly raised eye pressures and blood sugars for a few months but no extra intervention required, both returned back to normal. I did have a cataract replaced, but who’s to say I wouldn’t have anyway.
I’m no madder now than I was pre Pred (but that’s not saying a lot!)
Take care, and think about this carefully- no drug is all good...or all bad.
Whilst you may decide not to take Pred have a look at this it may still give some pointers on how to manage your PMR -
Thank you so much for the information , I have so little and am reluctant to read too many articles on the internet that may not be accurate .
My main concern is developing GCA as I only have good sight in 1 eye since birth .
I have a Gp appointment for end October (I’ve waited 5 weeks for that ) I will get a good list of questions to ask . Once I have all the info and I am convinced PMR is my issue I will make an informed decision about Pred .
Well hopefully the info on here will give you confidence to make a decision… the forum is backed by the charity and all of the participants are patients/or ex patients who are going through or have gone through PMR and/or GCA. And any advice we give is from reputable sources….
.. and no you definitely don’t want to risk GCA for obvious reasons. Most don’t have sight issues, but that usually is the most feared…
more knowledgeable people than me will answer .... but im newish too, my experience was suddent drastic pain and exhaustion, worried it might be Lyme or Long Covid, took a couple of weeks to get appointment to see GP and I was worried she wouldnt take it seriously but she did, loads of blood tests to rule stuff out, and a plan when prednisolone worked dramatically which was start at 15mg, drop to 12.5 after 3 weeks, then 10, then drop 1 mg every six weeks unless I get problems. She also recommended the information pack from pmrgcauk and warned me about GCA symptoms being medical emergency so to be aware ... I hate taking anything especially long term like this but I can now function and do things I enjoy ... with care over fatigue ... and I do know a few people who went through it and are now off steroids and seem well ....
Hi and welcome! We are here to help you understand PMR better and how to make the most of life with it and managing it.
However, I will say from the outset that you will find very few people here who will provide you with advice on managing PMR entirely with diet and exercise - simply because if you have PMR, the likelihood of doing that is very very small. People arrive saying the same every so often bit within a few months of trying it, they realise it doesn't give a very good quality of life and give in to taking pred.
I have had PMR for about 20 years - I was 51 when it started. The first 5 of them I was not on pred because it wasn't diagnosed so I too managed life with diet and exercise. And I'll tell you now, it was pretty hellish. It was about a year before the niggly sort of things - couldn't raise my arms above shoulder level without discomfort, couldn't hold a hairdryer without resting my arm against the wall, struggled with going up stairs, couldn't do a step class that had been easy just a few months earlier, difficult to turn over in bed - suddenly almost overnight turned into excruciating pain that stopped me even getting out of bed, I stomped down stairs like a toddler and crawled up on hands and knees. I could no longer do anything at the gym I went to and changed gym to one with a pool in the hope that would help.
I discovered that an aquafit class in a warm pool improved the stuffness enough to allow me to do a Pilates class. But that was all I could do. I was self-employed so chose my own work hours, got straight into my swimsuit from bed, struggled to the car and to the gym hoping I could park close to the door. There was an off-peak ticket that gave me access to 2 pools and a class every day. And that gave me enough mobility to keep going. But it did nothing for the pain - that was a constant. And the GP was baffled. However - I still managed to ski a bit here over the Christmas, nothing like what I had been able to do though.
Then I was stopped from driving - wrongly as it turned out - and I couldn't get to the pool, I was housebound, I couldn't walk to the busstop never mind get on or off a bus. I was in constant pain and depressed. I managed to get to my flat here in Italy - I slept for 3 days when I got here. Having no stairs to deal with helped me get mobile enough to get to the ski bus in the village. I dosed myself with ibuprofen and took my skis to the depot at the bottom of the mountain so I didn't have to carry them far. And the lack of stairs enabled me to get up the mountain - after a single very short run I could almost move normally - it was still painful. But I was out and in the sun! I could manage a few short blue runs before the fatigue bit and after a few weeks I could ski for a couple of hours.
And in the afternoons and evenings I worked or searched the internet to work out what I had, Until I found PMR mentioned on a GP blog - the description fitted me like a glove.
A few months later I stood outside the chemist at 10.15am and took the first 15mg dose of pred and drove home to work at the computer. At 4pm I stood up and walked downstairs, made a cup of tea and carried it back upstairs. Then I realised what I had done - moved normally and without pain for the first time for nearly 5 years.
We notice that patients who, like me, were not diagnosed for a long time or who. like you, reject pred or their doctors try to force them off it, tend to have longer and more difficult journeys. It is your choice - but it isn't a simple case of pred bad, no pred good. There is rampant unmanaged inflammation in your body, increasing the risk of developing other illnesses, such as cancer, depression, vascular disease to mention just a few, while at the same time causing immobility and other problems due to pain and stiffness. Some become invalids, bedbound sometimes, unable to toilet themselves because of the pain involved in trying to turn to clean themselves, need help getting dressed, many have to give up work. Pred relieves all of that and you can live an almost normal life. I know which I prefer.
It would not be usual to be sent off into the sunset simply clutching a supply of Prednisolone. A comprehensive set of blood tests to check on all forms of inflammatory arthritis/myopathy/myositis, kidney function, possible anaemia etc etc and follow ups to check on progress and results should follow. Ditto advice on osteoporosis prevention etc etc. PMR is only successfully managed initially by long term steroid treatment which isn't started without proper consideration of the diagnosis. 'Inflammatory marker of 4' doesn't really explain itself.
i wonder whether you could contact your GP surgery to ask for more details or an early appointment? It doesn't seem right to have so little information or follow up plans. To make sure they (and you) know whats going on?
sorry yes brain fog i guess .... but GP might think she is taking it .... if aware at all .... and youd think theyd not want it prescribed so vaguely .... two months supply no plan?
I've responded to many post like yours over the five years I've been living with PMR, and always said the same thing; "Prednisolone is your ally and not your enemy in the management of this condition".
Like so many before me, I wasn't going to take steroids because I had been fit, active, health conscious and 'anti' most medications until PMR was diagnosed. Diet and exercise plus a few carefully selected supplements would surely do the trick!
I learnt the hard way that it would have been an extremely rare occurrence for that regime to have worked, and taking the steroids truly was the only way forward.
However, I've also learnt that, yes, steroids can & do come with some side effects, but most can be either prevented or managed quite well.
We won't all develop all the side effects we read about. Some people may never experience any, but if you've done some research and know what to be mindful of then you'll be more able to minimise or eradicate any issues that may arise.
Exercise is important, but as I have learnt, it needs to be scaled right back for most people. You can't just 'push through' as this is likely to induce a flare of the condition, which will then require an increase in steroid dose to mop up the extra inflammation caused.
For instance, I engage in different forms of exercise to help maintain muscle mass, bone health, cardiac health, etc. So walking, swimming, gym machines, free weights, yoga.... all of which I find really helpful, as long as I pace myself and don't overstretch myself!
It's about finding your own regime (and boundaries) that work for you though, so do as much research as you can about your condition and medications and arm yourself with as much knowledge as you can..... but only from legitimate sources though, such as this forum.
It all feels quite scary and overwhelming at first, but it's usually not as bad as people fear.
I agree with Kendrew, and I prefered supplements etc to prescription meds, etc.
However, nothing will treat the painful effects of PMR except pred.
If you were given a starting dose of 15mg, give it a try. It could well be miraculous, as it was with me - totally pain-free and back to normal within 2 hours!
Once on, it's just a question of (in the future) tapering down your dose very very very gradually, until, further down the line, you will probably come off entirely.
I was one of those that held out starting prednisolone because I was so concerned about the side effects and for the first few months I did find it manageable. Mostly because I had been very fit and healthy to begin with. But slowly and surely things got worse and worse. I found myself crying every morning over the struggle to put on one sock. I was no longer able to pick up and cuddle my grandchildren. After 5 months I realised I had no life and it couldn’t go on so I took my first dose in flood of tears at what I was embarking on - but I have never looked back.
Now my only regret is not starting sooner. It took longer for the steroids to remove all the inflammation - I could have tapered sooner if I had not let it build up so much. Also several months of reduced mobility it has greatly affected my muscles and it has been a slow recovery building them up to again to normal life level. (Forget the frequent gym sessions I used to do).
The advice given here is brilliant. Good luck with whichever course of action you take.
That’s interesting , did you stay on pred’ ‘ long term ? I am hopeful to find someone that’s been on it and off it after a short while but lots of people seem to be on it for years and years and that worries me .
That is because PMR in general lasts for at least a couple of years and more often than not longer. The pred cures nothing, it is a management strategy to keep a chronic inflammatory condition under control so you have a better quality of life.
I asked my world-expert rheumy recently about patients/doctors who claim PMR was managed and the patient was off pred in a few months. His immediate reply was "It wasn't the PMR we are talking about in the first place." PMR isn't the disease - it is the name given to a set of symptoms that may be due to a range of different underlying conditions. In our case and what most doctors mean by PMR it is an autoimmune vascilitis that leads to inflamed blood vessels and impaired blood flow to various regions of the body. You get off pred when that underlying autoimmune disease burns out and goes into remission.
I am hopeful to find someone that’s been on it and off it after a short while
Doesn’t work like that -PMR is a self limiting disease -so has its own timescale and rarely is it a short period! Two years minimum… very often longer.
Certain conditions are treated with short term pred, such as inflammatory bowel disease. A friend has Crohns and he often has to take a short (2 week) course of a very high dose. It can also be given intravenously for severe conditions. This short dose is usually enough, in these cases, to bring the flare under control.
However with PMR, you are given a moderate dose to start with but need to use pred long term until the disease goes into remission, if you're lucky. You slowly taper down until you find the dose that manages your symptoms. If you stop taking it too soon, you are back to square one. If you taper too fast you can go into adrenal crisis. So we are all in it for the long term, but we wouldn't be without pred!
Hi I'm 58 and was diagnosed 2.5 years ago . My blood results were in the 50s and I was in a lot of pain. I am down to 1mg 5 days a week and on the whole have been fine. I feel I would have been off it now if I hadn't got COVID last November after which I didn't taper for about 10 weeks. I get a few skin itches whenever I drop down and some fatigue. I have found this forum really helpful and really rate the advice given. Do bear in mind there are a few people who are off pred after a year or two so they don't really get involved. Also remember that some GPs are not that up to date or knowledgeable about PMR. My neighbour however has sadly lost some sight in one eye due to GCA so that made me always taking the pred. Good luck
I’m in pretty much in the same situation . At first I thought it must be arthritis being 74 and the cool damp weather we had this spring . There were days in the gym that the pain did not get any better and by the time I got home all I wanted to do was sit in the recliner. Then if i sat in the recliner too long, i was stiff all over again by the time I tried to get up. Then one morning suddenly I could barely get out of bed and had to be helped get out of a chair everything hurt. Went to My GP and he did pretty much the same as yours 1 month of prednisone and we will do another blood test in a month or so. The prednisone worked a miracle with pain and I am back at the gym with a revised work out that lets me function close to normal the rest of the day. This website has been a God Send as I had no idea about bumps that are ahead and the ways you can deal with them. While being new to this disease these wonderful people are helping me to devise a program that will get me ready for the tapering of the prednisone down road. Hoping you will experience great results as I already have.
As I have had PMR three times now, I thought I should reply to you and let your know that you can live with this condition and not be in pain everyday. I was diagnosed when I was 50/51. I just started noticing my legs and arms were aching. The doctor put me on 15mgs prednisolone for two weeks and all the pain went away. I went to see a specialist who just told me to get down to 7mgs daily as soon as possible as then I would have no side effects. I managed that quite quickly and over the next six years finally got down to 2mgs. I was advised to take that dose every other day and kept forgetting so I realised I didn't need it at all. That was 2014. No problems then until 2020 when pain returned in my hands and wrists. I went back on the steroids for a year, starting at about 12mgs (I think) and working my way down. All fine again until this January when I did a lot of flower arranging and the pain came back. This time I had to start on 20mgs to get pain relief but I am now down to 5mgs daily.
I walk a lot and swim a mile once a week. I have been doing this despite being on steroids, but I couldn't do it without. Normal painkillers, even the very strong ones just do not work and being in pain and not able to get on with your normal life is no way to live.
I am 71 now and do more exercise than all my friends. Most people think I am in my fifties, so years on steroids has not affected the way I look or the way I behave. Pain, on the other hand, can really diminish you. My bones have supposedly suffered from the steroids, but how many women past menopause don't have Osteopenia? I think it is just part of the ageing process. Apparently I still do NOT have osteoporosis.
You say you have been struggling with this illness since January, which must mean you have been in pain for most of the year. You really don't have to be.
This is an illness that needs medication to manage the pain, but it does go away and steroids allow you to live a relatively pain free life until that happens. I take lots of herbs, prescribed for me for inflammation, but although I am sure they help, without prednisolone, I would be miserable.
You can't 'manage pain' with exercise in my experience. Get rid of the pain and then you will be able to exercise and properly enjoy your life! I hope soon to hear that you are feeling much better and not worrying about an illness, which is far more common than you would think. You will always get bad days when you feel exhausted, but in my experience they were fairly rare. So don't despair. Take the prednisolone and taper it slowly and you will probably get better in no time and not need it at all. Above all, don't live in pain. It doesn't do you any good.
I too am newly diagnosed (March this year) and I have rapidly learned that you cannot “manage“ PMR on your own – it manages you. I woke up unable to get out of bed or dress so started rather beyond the point of being able to cope with the disease, but I thank God daily for the pills and that’s not something I say easily. Do searches on this site and read others experiences – you will get far more sensible information here then 99GPs out of 100 can give you. Yes, there are some side effects, but I would take them again 100 times rather than go back to as I was and actually the side-effects have gone away over the last few months so now I am virtually side-effect free at 10 mg a day.. Good luck, but do everything you can to speed up your appointment as PMR untreated is miserable and life is too short to be miserable!
Hi there, I am 62 and was diagnosed with PMR in April after 2 months of pain and restricted movement eventually becoming immobile not able to get out of bed, lift my arms dress or walk outside with excruciating pain. My GP diagnosed straight away when she saw me. My inflammatory markers were in the high 30s. After 6 hours on 15mg of Pred I was almost completely pain free. I did however have many side effects - daily headaches, blurred vision, anxiety, mood changes, which most abated once I got to 10mg in Sep. I am now on 9mg and can do most activities but definitely get tired and have rest days if I do too much.
I read way too much at the beginning and was terrified of Pred and GCA. I cut out all inflammatory foods - no sugar, white foods, alcohol as didn’t want to put on weight - was also angry that I couldn’t exercise and felt like I had no control. I definitely felt angry for first 3 months and side effects did keep me home most of the time. I couldn’t believe how hungry I got especially in the middle of the day - eating nuts and protein really helped here. Now 6 months on I have actually lost several kilos, have energy back, no pain except for a bit of stiffness if I do too much and mentally much more positive. This site has helped me so much and I now understand that the inflammation we have with PMR is more damaging to us if unmanaged than the Pred is. Your fear is very normal and it’s amazing how many people come on this site newly diagnosed after being fit and healthy. I have accepted now after much resistance at the start that Pred is the only thing that gives me much of my life back - even if it feels like a different life. Take care.
Welcome to the forum. This is place to be to help you through. I, like you was so reluctant to take prednisolone and was convinced I could get through by changing my diet. How wrong was I?
I am down to 3.5mg from a starting dose of 15mg which began in February 2023. My aim is to be off it by next spring, but we’ll see what PMR says about that! I’ve had ups and downs, as no doubt you will too, but the support and advice you will receive from these incredible supportive people is second to none.
You cannot believe the difference to your life prednisolone will make. My advice is ‘don’t delay’, but it’s your choice.
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Recently Diagnosed PMR
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Newly diagnosed with PMR
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