My symptoms became noticeable about 2 months ago (although I think they had been around in a mild form for much longer but I passed them off as muscle strain/getting older) Following many blood tests to rule out other conditions the GP thinks I have PMR. I very reluctantly started on 15mg of prednisolone and after a week felt some improvement but not the 70% the GP expected. He has now upped the dose to 20mg so hoping that things will improve. Most of my discomfort is in the top of my arms and behind my knees which seems to ease by lunchtime (ish). My question is, have most of you found that all symptoms go completely once the steroids take effect or is there still a certain amount of muscle stiffness to be expected? I was an active 51 year old who played weekly netball and attended regular exercise classes. I have been floored by these debilitating symptoms and wondering if I'll ever get back to how I was before? Have any of you managed to maintain an active lifestyle following medication? Feeling very bewildered by this sudden change to my health so hoping some of you lovely people may be able to offer some insight. TIA 😊
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SNOWMAN546
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That is an interesting question, and I think the answer is, 'it varies'. I got, relief from severe pain at 15mg (6 years ago) but continue to be limited by stiffness, lack of stamina etc. I sometimes wish I had a t-shirt saying 'I am actually quite ill' as I try to maintain normal life. Weather is definitely one of the variables, along with stress and activity. I'm afraid we each have to work out our own adjustments... not easy, but this place helps. Good luck.
I want one of the shirts. I was sitting here last night after two days of intense pain but having to go to my pain doctor one day and pharmacy next. Barely made it out of pharmacy because of my hips and back. I have been paying to get everything delivered so.....this was a change. I was exhausted and sad and cranky. And I thought....I am really sick and I need to get this is for the long haul. While I understand that for sure....my heart needs to accept it. I am not sure it has. The most debilitating pain for me is pain around my waist level at my back. So back spasms after being upright for a short amount of time. Not on my spine but on both sides. Then down some towards my butt. Nothing is working. Pred 28.5. If anyone has any ideas pls. let me know.
Yes you will get back to normal in time, but you have to realise you have a serious systemic illness which needs managing, so you need to take account of that…it’s not just take the tablets and everything is tickety-boo ….as you are young and fit you hopefully will get through it easier than some, but no guarantee
Hi, Have a good look through DorsetLady’s link, as you will find it contains excellent information.
I was started on 20mg pred, then upped to 30mg within a couple of days by my GP. It was three weeks before I started to taper down, having by that stage become just about pain free.
Initially, I stopped playing racquet ball, which was a weekly activity, but after a couple of months I was back on court, albeit playing much more gently!
With PMR, which was entirely new to me, I learned the hard way that you really do have to take things easy, and give yourself plenty of rest. Prednisolone was a life saver for me, but you should not be pushed to reduce your dose too quickly. Listen to your body, and only drop down when you really do feel ok to do so.
Life doesn’t stop, and, with much patience and very likely frustrations, you should, in due course, be able to get back to a reasonable lifestyle.
How long is a piece of string? It depends, not just on the activity you want to do but also how YOUR PMR manifests and progresses. For some people the underlying autoimmune disorder that causes the symptoms burns out and goes into remission in 2 years or less, For some it is never severe enough to cramp their style - while another highly athletic and fit person may end up in a wheelchair and have a much harder journey
Skinnyjonny was in the second class - a firefighter who went from climbing the Himalayas and running 10km races to a wheelchair - and back:
I started at 40mg and received relief within 12hrs but needed 50mg to garner 70% relief although 70% sounds unimpressive prior to prednisone I needed help out of bed and to dress myself I couldn’t walk normally I was diagnosed in July of this year I been on prednisone & methotrexate injections and recently had 8 really good days where I felt like I did prior to PMR except muscle strength was not there those good days have given me hope.. Best of luck to you
PMR in my case was characterized by shoulder pain and pain in my upper arms to such an extent that I could not take anything out of a cupboard at eye level or above. Also my hips were very stiff and I suffered from low backpain. I feit like 85 although I was 73. My rheumy got the right diagnosis right away and let me start at 20 mg prednisolone/day. After 3 days I felt as reborn. The dosage went down very slowly about monthly and when switching from 2 to 1 mg pred/day I got my first Astra Zeneca vaccination followed by fever 38°C and flare up of PMR and I feit 83 this time. Pred was increase to 6 mg/day and it took 8 days before symptoms were gone. Since then I went down extremely slowly to 1 mg/day. After a flu jab in October my right arm and shoulder started again but symptomswere bearable and over a period of 6 weeks pain and stifness resided slowly. If 20 mg/day isn't improving your symptoms, I believe you should better see a rheumatologist.I wish you the best in 2023.
It’s a very daunting diagnosis but try not to worry. Keep asking questions. Stay calm. Drop the carbs. Be kind to yourself. REST AND REST AGAIN. good luck x
Thanks so much for all the responses. It's almost a week since my first post and I am now realising how unpredictable PMR can be. Upping to 20mg made an immediate difference but over the past few days the pains in my upper arms have started to creep back. Due a review with my gp today but very reluctant to up pred any further so may just see if symptoms subside (I started back to work on Tuesday so this maybe the catalyst?) Who knows.
So reducing or cutting carbs altogether makes a difference? I think I can do this but usually have a quick piece of toast with medication before I go off to work. Silly question but what kinds of things do you eat for a carb free breakfast (preferably something warm on these cold mornings)?
Sorry me again! Writing this recent post has just made me realise actually how far I've come in such a short time. 2 weeks ago I couldn't get out of bed, get dressed or walk down the stairs without help, never mind thinking about going to work! Just thought I'd share a positive thought on this gloomy Thursday morning 😀
Eggs ... Any sort of meat. Cheese. It helps to think outside the UK/USA concept of cereal and toast and when you look at the world's breakfasts it becomes easier. Google low carb breakfasts ad you will find lots of idea.
But yes - being back at work could well account for the return of symptoms - lifestyle changes are often needed. This isn't something where you take a pill and everything reverts to pre-PMR. pred isn't a free pass to going back to your previous level of activity, it cures nothing, it is a management strategy to relieve the pain and other symptoms to allow a better quality of life until the underlying autoimmune disorder that creates the inflammation burns out and goes into remission which it does for some 95% of patients - but how long it takes is very variable.
PMR does come under disability legislation so you can request reasonable changes in your workplace that will aid you to continue working.
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