PMR can be so painful and even worse, makes you feel ill, old and tired out. The steroids thankfully get rid of the pain.
I was around 60yrs old when I was diagnosed and started taking steroids. This site helped me so much- to understand the illness and to answer Q’s / support me when I needed it. It took me 2.5 years to generally recover / be able to manage off the steroids.
The next 3 years I’d say I was up and down with energy levels & how well I felt- no pain though.
The last 18 months I’ve felt great- I’ve managed to lose 1.5 stones and am able to do 4 exercise classes a week- dance, circuits, pilates and yoga - as well as lots of dog walking and gardening.
I’ll never forget the terrible shoulder/arm pains- like electric shocks- and am still conscious of not getting stressed or overdoing anything.
I’m posting to give hope, and to show that you can get pain free and well again. I’m now 67 yrs old
How did I lose the weight - sure I’ll be asked this! ( Mostly put on after taking steroids/ PMR illness, and then overeating and being more static in lockdown! )
Decided to cut out nearly all carbohydrates - eat protein, salads, veg, nuts, some cheese, yogurt, butter, oil ok limit fruit to one piece a day ( high in sugar)
Restricted calories to 1200-1400 per day used NHS weight loss app to count calories/ log weight & waist measurement.
Ate within an 8 hour window only. Brunch at 11.30am, Dinner about 7pm Snack on cup a soup/ rice cakes / nuts/apple if needed.
Had one G&T each night at 6 ish !!! ( measured !). Followed by slimline tonic only
Cheated a bit here and there but found it mainly ok lost weight slowly over 6 months Have kept it off too . Now eating carbs again but watching scales/ cutting back when needed.
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suzieh
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Thank you for sharing this with us. When I first read up about PMR and found that the steroids can make you put on weight I too streamlined my diet. I gave up alcohol, eat salads for lunch and cut out sweets (except one square of dark chocolate a day) biscuits, crisps etc. I have lost nearly half a stone - which for me is good as I was pretty static, weight wise, before. I haven't quite got around to not eating potatoes (as my family eat them a lot and I hate to miss out entirely- so I eat fewer than I used to) also find it difficult to eat only one piece of fruit a day (despite the sugar content) as I love bananas, apples, grapes and tinned prunes. I try to justify this with the goodness in them. I also love nuts (all nuts) but do stick to rigid portion sizes. And I love avocados and salmon and...... and I could probably eat a little less I guess.
Think I was just fed up with the layer of fat mainly around my middle! Also some clothes were getting tight & didn’t look good. I just felt determined to shift it once and for all. ..... and not buy the next size in clothes.
I think it's amazing that you've done so well and I'm impressed. I also have a layer of fat to shift and don't want to have to buy new clothes so I'm going to keep trying to eat more sensibly - oh, and use my exercise bike more often. I really want to get to below 10 stone, and stay there. Managed to get down to 9 stone 13lbs for one day but went up again and now settled on just over 10 stone. Doesn't seem like a lot of difference but if I can just make it to 9 1/2 stone I'll feel a lot better in my clothes and in myself. That's the aim at least. Wish you luck with your continued recovery and great that your off the steroids now.
My lowest weight was 9stone 7lb, I’ve settled at 9stone 9lb which is great for me(5’ 6”). Clothes fit comfortably again. Even felt slim in my bikini a couple of weeks ago in an all inclusive hotel abroad! Put on 3lb that week but back to 9stone 9 within 10 days when home. Find your determination and lose the extra weight- once at new weight it’s easy to stay there once you’ve worked out how. I’d say weigh every day and adjust what you’re eating accordingly.
I do weigh myself every day, have for most of my adult life, except for last year when I couldn't be bothered. I've kept a weight diary for about 15 years and it's interesting looking back and seeing how the weight has gone up and down, usually not by very much each year but slowly edging up over time. I'm 5'7" so about the same as you but when I was 18 I weighed 8 stone 7 lbs (this is back in the 70's) and was told by a model agency that I was too thin - bearing in mind that Twiggy was a top model then. I wasn't anorexic so I couldn't understand their logic. I ended up going to another agency, Lucie Clayton's, instead.
I too weigh myself every single day and also have kept a diary....doesn't seem to fluctuate that much. I also write everything down that goes into my mouth (daughter thinks I'm mad) haha !! It's just become such a ritual after all these years. I have so many A4 books full of weights and food I've eaten. At least doing that I now know that apples do not agree with me....you'll know without me writing what they do, known for this in some people.
I've become more ritualistic since I retired although not as bad as my mum was - she used to write absolutely everything down: where she was, what she'd been doing etc. I asked her once why she did that and she said it was in case the police ever wanted to know what she'd been doing at any particular point in time. I ask you, no one would ever think she'd done anything for the police to question that of her! She also had, probably many hundreds of little books, all written in Pitman's shorthand. She used to be a secretary. I think she watched too many detective programs on TV.
Haha bless, I did Pitman's college too and in an office for my of my working life. Met my husband working for the Electricity Board (Seeboard) and still have many friends from those days that I hook up with on f/b.
I went to Pitman's College as well and learned shorthand - surprised to hear from a Pitman's employee that they no longer teach it, instead they teach speed writing because it's easier! Mind you, it's got me many an interesting job as I could take down speech verbatim so I never regret learning it. Also, one writes in shorthand when one doesn't necessarily want the world and his wife to read it - very useful - even if it is only details of one's every-day life. Very useful tool.
I tried teaching myself T-Line Shorthand, but gave up when all my words started to look the same! I appreciate all the more how difficult Pitmans was to learn and kinda sad that they no longer teach it.
Like you, I've put on half a stone due to pred. My normal weight is around 9.7/8/9 or even 9.10. so I don't think I've done too badly weight wise. My weight has gone to the tops of my legs and waist plus my fingers have all gone fat...wonder why fingers !! Not been able to wear any of my rings in 8 months. I try and watch what I eat but to deny ourselves of everything (I'm 74) not much of a life is it and life is short. I love my choccy and have 10 squares of Bourneville on most days. Don't like the 70% cocoa solid choc, tastes like cardboard to me. I've almost polished off a bag of M&M'S today, what a piggy I am, they are so moreish.
I've put on about 5lbs and it doesn't seem to want to shift, even though I try to stay on a very low carb, high protein diet. I love the dark stuff and have 2 sqs of 70% most days and an occasional glass of wine - as you say life is short. Annoyingly, the weight is around the middle and tops of legs but then my exercise is limited due to PMR and knee bursitis. Since dropping from 7.5 to 6.5 mg I was stiffening, aching and my head is on walkabout so have increased to 7.5 again yesterday and just hope it settles. Also feel like I might have a panic attack/low blood sugar feeling - very disconcerting. Enjoy your 10 squares!! I shall think of you when I'm having my 2 - with envy!
Two squares of choccy would be like giving a donkey one oat. That 70% cocoa solids is like eating cardboard. Bourneville for me. I've managed to get down to 9st 12lbs. I know if I keep of the sweet stuff it would shift. My original weight is approx 9st 8lb, so only 4 lbs to go. My weight is in the same places as yours. At 74 for goodness sake I'm no longer worrying about it....more important things to think about. I'm currently taking 8mg with the occasional day on 7mg. Soon it will be more 7 with the odd day of 6mg....dreading getting down to 6mg as that's when GCA hit me, then right back up again. Hope our Adrenals kick in when they'r required to do so.
Thank you for this post. Gives me more hope. I think I’m in the middle of your journey. Not on steroids and generally not in pain but energy levels fluctuate and I’ve put on a lot of weight since diagnosis. I feel so much weaker and so much older than I feel I should at 54. But I’m now trying to rehab slowly. Bought an excercise tracker and doing the NHS weight loss plan.
Though have quite stressful situations at home I can’t avoid.
I weaned myself gradually off the steroids. Don’t now need any. The only medication I take now is thyroxine for under active thyroid- have been taking this for 30 years.
Thanks Dorset Lady -,rheumy unsure if PMR or not (bloods normal - even though many present normal bloods) but also my own decision to weigh up pros and cons - At the beginning I couldn’t hold a kettle or walk far at all. I now have a low grade muscle ache - I’ve also become unfit and put on weight and gone through menopause too
I am on a weight loss programme and slowly getting fitter and am feeling better for it.
I wonder at what point do we wave bye to steroids on this journey?
I think there is a cycle (for me anyway) of doing less, eating a bit more, feeling fed up and less motivated etc etc
I’m 54 abd feeling a lot older post PMR but beginning to feel myself again
If there's a doubt it's PMR then fair enough not to go down the steroid route, I'm sure many do, and certainly have in the past when it wasn't always recognised (not that is these days at times!), and as it is self limiting, there normally is an end - unfortunately can't tell you when - 2-6 years is around the average - but for some it's longer.
I didn't have PMR, I had GCA - and there was no doubt (eventually) so had no choice on whether to take steroids or not. Been off them now for 5 years, and do feel great, whether that's because no GCA or no steroids or both I don't know... but as I have osteoarthritis and have had 3 joints replaced in the last 3 years I'm guessing it's probably the lack of OA pain (which is chronic and debilitating).
I did start Pilates a year or so into GCA treatment to build up my muscles after steroids and 18 months pre diagnosis of little exercise - always did yoga beforehand) , and still do it now. It was a struggle to start with, but it really help, on many fronts. Would recommend it - perhaps if you could find a practitioner who does a taster session it might be worth trying - you really need one-to-one initially if you haven't done it before, especially with our muscular issues.
But you might find that a relatively low dose dose gives you a better quality of life...but of course it's entirely your choice.
Thank you - yes , we are moving soon and I have heard yoga and Pilates are very good and will look to join a class. I love spending time outside for mental health benefits and have avoided classes but think I need core strength. For me I prefer to be off steroids as my symptoms are relatively mild now. I did need them at the start.
I’m noticing the more excercise I do now, the better I feel so whether some aches are due to PMR or being de conditioned by it.
I think I’m in recovery slowly
Chronic pain is indeed debilitating both mentally and physically
If you can manage without steroids I would. I really couldn’t manage without them at the beginning, because of the terrible PMR pains. Before diagnosis, I could barely move without crying with pain. Dr had prescribed strong anti inflammatory drugs but they didn’t touch it. Another Dr suspected PMR & gave me Steroids while waiting for blood tests. They were marvellous- within a few hours all pains gone!
However, it took me a long while to taper off them- over 2 years. Had to keep stopping to allow body to adjust / not feel pain/ recover enough to say I felt well without any.
Even when I stoped taking them it took another couple of years feeling up and down with energy levels. Only really this last year I’ve felt ‘normal’ & back to activities I want to do. It’s an individual thing of course & none of us know what the future holds. I’d say do what you can, when you can. Keep upbeat, plan nice things to do and try and eat healthily!
You do need to remember though that it isn't a simple case of pred bad, no pred good.
Until you take pred there is unmanaged inflammation coursing through your body and doing damage to the areas it affects, including the linings of the arteries that are inflamed, The damage that causes is thought to be behind an increased risk of PAD (peripheral arterial disease) as the damaged vessels lining forms the basis for development of atherosclerosis. The inflammation is also a risk factor for depression. And unmanaged PMR is thought to be far more likely to progress to GCA - and then your options are high dose pred (at doses far higher than anything required for PMR) or risk irreversible loss of vision - which can be total as once the sight in one eye is gone, the chances of retaining sight in the other eye is only 50/50.
Longer term, the ongoing disability and pain of PMR is a major factor. I had PMR without pred for over 5 years before a doctor offered pred in the mistaken assumption I had a flare of an inflammatory arthritis or he wouldn't have suggeted it - in 6 hours I went from crawling up the stairs on hands and knees to normal movement. If PMR really did only ever last 2 years, maybe it could be contemplated - but it doesn't, 4 or 5 years is much more likely - and 40% of patients still require a low dose of pred after as much as 10 years.
It can be a long and painful journey if you reject pred - and there may be some nasty surprises in store.
I really needed the steroids at the beginning, and would say to anyone keep taking them as long as you need them. I know I have been fortunate in that I reduced slowly over 2.5 years & then found I could manage without. The next few years we’re not easy- good days, bad days in terms of feeling well/ energy levels. Particularly found mornings difficult in getting up/ getting going. Had to do this in my own time- mainly slowly and gently.
Fortunately I’m retired so had no pressure if work. (And an understanding husband! )This last year (roughly 6-7 years since my PMR started ) I feel well again with lots of energy. No PMR pains at all.
Occasionally still have mornings when i feel I can’t get up straight away.
Guess I’ve learnt to live with it all and of course hope it never returns.
Thanks. This is the Mayo paper, which is quite a small sample size, and is contradicted by larger studies, including a German one referenced at the end of the paper which found that 25% with PMR were still taking steroids after three years, unless I've read that wrong?
and am now wondering whether my shoulder pain is actually part of the PMR issue, not solely the arthritic neck - it could explain why it gets worse when my pred dose is lower, even when the rest of me is fine, maybe. Sigh.
Thank you. Yes I couldn’t manage without the steroids at the beginning- I’m so much better but not there yet. Your post gives me hope to stick with exercise and diet
Good. We all need a trigger to start a diet. Mine was buying new underwear usual size but I was not liking the look in the mirror. I was fed up with feeling fatter than I wanted to be. We can’t help getting older but we can fix being too heavy and fat! I feel so much better 1.5 stone lighter -
Thank you SO much for this uplifting post, Suzie. It gives me hope. I was diagnosed at 53 and am going to be 59 in January. PMR is still plaguing me and I feel very low some days, but I dearly hope to get to remission one day and get back to my dance classes - I miss them so much. I can manage Paracise classes sometimes but would love to get back to my Zumba and ballet. Thank you again - I really appreciate you sharing your experience.
Well done, thank you for sharing. Great to know that there is light at the end of the tunnel. I'm struggling just now and was a little dismayed by the latest members information booklet on PMR/GCA I was sent this week. It is fabulous that the woman featured was able to work throughout, however not all of us are quite so fortunate and have had to take long term leave or give up work altogether, due to fatigue and addled brains. I try to live in the moment and take each day as it comes, but I sometime crave for my old life of working in a job I loved and doing something meaningful. I think the booklet could have included reference to the spectrum the condition and how some patients have to make adjustments.
I guess you are referring to the latest Newswire magazine.
The patients stories are limited in size ( know having written one myself) and are intended to be (hopefully) an inspiration to others.
We know everyone's journey with PMR or GCA or both are specific to that particular person, and lots of things affect that- severity of illness, general health prior to illness, age and gender being just a few.
Not sure how many editions of Newswire you have read, but I'm sure the points you make may well have been covered in a previous one or more, but why not contact the charity direct and make the suggestion...see inside page of magazine.
Ok that’s strange, there’s usually 3 editions a year I think…..and in the last 2 or 3 years they either come by post or email….originally hard copies only.
Not sure if you obtain back copies, can’t see anything on the charity’s website. I have some PDF copies so I’ll have a wander through and see if there is anything relevant. ..and let you know if I find anything.
Oh, what a lovely uplifting post, thank you! How inspirational! With the rain pouring down and the grey sky outside it's easy to feel down and discouraged. I feel 10 years older since I got Pmr 15 months ago. I'm no longer able to to the exercise I used to, I'm comfort eating and putting on weight! I have managed to get down to 5 of Pred but my walking ability has got so bad (weak, tired legs) and I'm constantly wondering if I should go up again. It just takes over one's life. But it's good to remember that it doesn't last forever (usually!). Everything changes in nature, nothing stays static.
So it took you about 7 years to feel' normal' again. That's quite a big chunk out of one's life. So the message I got from this is 'accept what is and don't try to hurry it'. I'm thankful for all the things I can still do, it could be worse!
No alternative really but to accept it and let it run its course. When feeling fed up I always try & be positive & think of others less fortunate. Works for me!
Hi Suzie, and everyone.Am I the only one that has lost weight on steroids? I lost a stone, when I was on 15 to 10mg a day I had such energy, I was buzzing and decorated the whole house inside and out. My rheumatologist thought I might have some other problem causing the weight loss and had me x-rayed etc but could not find anything. Once I reduced the steroids down to 5mg the weight has come back to normal. I put it down to being naturally a busy person and having the release from the stiffness in my legs and shoulders was able to return to my normal exercise plus the pent up demand from not being unable to do much for months. Even when I get stiffness I try to not let it limit me except long walks are now now longer possible.
Nope - you're not alone. Not many PMRers loose weight but.....! I lost over 1,1/2 stone within a couple of months after starting Pred (and that was over 9 years ago) and I have never put it on again.
Is the moon face really avoidable? I lost 12lb rapidly, 6 each with both PMR and then GCA, but then despite eating less, and far fewer carbs, 10lb came straight back as soon as I went on to a a higher dose of pred, within a few weeks! Is it not just a weight redistribution? And why does the eye-nose part of my moon smart so much all the time? Surely overweight people don't have smarting faces!
With PMR I gained weight - comfort eating and immobility for 5 years. With pred the weight redistributed to the back of my neck, around my midriff and some around my face but I didn't gain any more weight or get the classic moonface until I was switched from prednisolone to methyl prednisolone and within a very short time I gained loads of weight and the moonface appeared. I had a lot of other nasty side effects too and eventually my GP suggested we switched to the only form of prednisone available here where I live, Lodotra. I also went on a low carb diet and within a few weeks the swimring around my midriff started to melt away - the spare trousers I took with me for my daughter's wedding just fell down!! Over about 18 months I lost 35lbs of PMR and pred associated weight before getting stuck and my doctors say there is no real sign now I am on long term steroids - although on discharge letters from hospital an old diagnosis says Cushingoid. I have a waist, I am chubby, but then, I always have been! Since the beginning of Lent I have lost nearly 6kg despite being on 15mg/day pred.
When you know at the start and avoid carbs right from the start, you can avoid the real moonface although most people do find their face plumps up. Both piglette and Snazzy were successful in that and I'm sure others have been too.
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Can you describe a flare?
Can you have PMR if you are under 50?
PMR can you blockout the pain
Please can you guide me.
