Completely out of the blue I've been diagnosed with PMR. From running, strength training, swimming and generally being a very fit,healthy 66yr old i woke up and couldn't get out of bed!I've been on 15mg pred for 5 wks which ha helped no end....however my shoulders at night play up dreadfully. Its hard to turn over,very painful and i have to use one arm to help the other if i need arms outside covers. Seems to be when i try to get my arm from shoulder level and higher the pain is right in the joint but i have no joint damage...hoe this makes sense! Anyone else get this and any advice on sleep aids to support would be welcome. Daytime i have no probs. Also wil i always be in some sort of discomfort or will the pmr go?
Thankyou
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Hello and welcome, you will get a better welcome reply from DorsetLady .
In the meantime, are you on 15mg still or have reduced? What is the plan there?
Has your night pain always been there or has it crept back. Also, have you gone back to normal activities? I ask because it is a normal response to the relief of the shocker of sudden debilitating pain from PMR that often comes out of the blue. This isn’t advisable because the Pred is merely helping to quell the inflammation being caused by your very confused immune system has decided that certain areas are the energy. These are around your joints (not the joints themselves) and muscles. Until that comes to an end over time you need to pace yourself and exercise carefully and REST. For a super active person this means going back to a preposterously low level (by one’s reckoning), possibly even gentle walking. Then you build up as if you’ve had a bad injury and find the current level you can cope with. This level will also not stay the same, in either direction.
Pain often is worse at night and mornings because the body produces inflammation causing substances in the early hours. Some people take their Pred around 2am to make sure the morning is more doable.
Anyway, it’ll help if you fill in a bit of detail and other will reply 🙂
Hi...thanks for your swift reply. It goes in the day and I'm quite painfree compaired to what I have been. Just back to gentle swimming and walking...chair yoga too. Following some info on here i now take my pred at 2am which had really helped so I'm now mobile first thing. The shoulder pain eases once i get up and move around but probably starts around 4am.
I know others are suffering far more than me but hating this thing. Think probably brought on by long term stress which i supressed...hubby has early onset Alzheimer's amd and sister diagnosed with non Hodgkinson lymphoma 2yrs ago.
Sounds as if your Pred dose is either not lasting the full 24hours and/or is not quite enough…has the shoulder pain ever gone - and what time does it wake you?
Maybe have a look at this for general information on your illness etc - and yes on the correct dose of Pred you should be painfree- or almost -
Thankyou for info. It wakes me around 4am i think...but goes when i get up and moving. The last couple of days I've been almost normal !! Very good info article thankyou. Dr appt 22dec to look at what hapoens next. Oh Joy !!!
The 4am makes sense if you read about cytokines—- see how it goes. Some find that taking Pred before then if they wake helps - but it’s still early days.
Re GPs appointment-don’t let him try and reduce you too quickly Guidelines may quote15-12.5-15mg but it’s not achievable for everyone -and probably best not to taper until after Christmas/NewYear -can be a bit stressful-even in a nice way😊
I tend to agree with DorsetLady in that 15mg may be too low a starting dose to clear out all the built up inflammation prior to diagnosis.
I believe the usual recommendation for starting is between 12.5 and 25mg. We are all very different, and for me the initial dose didn’t last the full 24 hours, even though I was started at 20mg. Perhaps you need another chat with your GP?
I can most certainly identify with your problems turning over in bed, and needing one arm to help the other; that’s classic pmr.
Ah thankyou...its reassuring to know that the shoulder thing isn't just me. I'm back at dr 22 dec and have asked for blood test b4 then .my level initially was 104 and came downto 19 at last test....fingers crossed I'm getting there slowly.
Agree with Dorset Lady and Charlie1. Dose of Pred may be too low for now. I had the same sudden onset in 2021, but not diagnosed until Jan. 2022 as retired GP diagnosed old age. Couldn't move. One arm had to help the other. Couldn't bathe, nor dress. Started at 20 mg. The next day actually reached over to the nightstand with my right arm and thought to myself, "oh...I just did that". A total improvement from then onward. Finally was able to return to work in Feb. Don't overdo the exercise, chores, etc. Rest even if you think you don't need it. Pred at first will give you a false sense of being completely energized. Still in the process of tapering (long story), but the slower the better. Even 1 mg. less can be too much for some of us. Some medical professionals are not aware of many things PMR and Pred related. This forum has been a lifeline for me over the last couple of years. Best of luck with YOUR PMR journey.
I also started on 15mg and the generalised pain was relieved in 6 hours - but it was about 3 months at least before the synovitis pain in hips and hands and feet faded to barely noticeable. It did go but slowly. The shoulder pain is probably bursitis - it will also be slow to go with just oral pred, injections MAY be worth considering. I've never had it in shoulders but my right hip is really bad at times. When you say no joint damage - do you mean erosion as seen in RA? What imaging has been done on your shoulder?
The fact that the pain is at night and eases with movement in the daytime concerns me a bit as that isn't typical of PMR - but is typical of spondyloarthropathy which occasionally can cause shoulder pain. Is your doctor totally convinced it is PMR?
From training for half marathons etc to a wheelchair - and back to almost at the top of Annapurna IV via PMR. He was a bit younger than average but did get back.
FWIW your symptoms are identical to mine at the start, nights bad, pain leaving later in am.Turning over in bed agony 🥵
Might the swimming be a bit much if your disease is still quite active and your pred dose not optimal? Especially on the shoulders. You dont say if its the CRP or the ESR that is down?
Yes, I can remember the arm thing right at the beginning and all that you described . My start dose was 20 mgs and it sorted all of this out. Your Pred dose is too low if your diagnosis is correct.
You have my sympathy! I went to the gym, weights, golf, swimming. I thought I was 40 something and within a few days, found that my real age of 68 was right! I sort of had to crawl out of bed. I too started taking my pred at 4.30am to make the next morning easier. I have bursitis in my left shoulder and apparently it is part of PMR and my specialist said I shouldn’t have cortisone injections when I’m on Pred. Mind you, he thinks I shouldn’t have Pred in the middle of the night either! Got down to 6.5 mg then my wrists started aching. PMR is such a grey area.
You may have to go up to 20mg for a short time till shoulders settle down. Usual protocol but ask yr gp. Best wishes.
Thankyou for the info...for the first time for weeks my shoulders didn't hurt this morning or through the night....yay! Must have been the good vibes from this group!
"my specialist said I shouldn’t have cortisone injections when I’m on Pred"
Absolutely no reason why not to deal with a local problem - superficial or joint injections are out of the system relatively quickly. DIfferent with a deep i.m. injection but some top rheumies in the field use them to smooth over a tapering problem as they taper slowly automatically and you don't have the sudden change of dose problem.
And studies show nighttime steroid is good - 2am for prednisone, 3am for prednisolone gives optimal morning symptom control.
Think your specialist needs to get out more - and also learn a bit more about what he's treating.. I had local cortisol injections for AO pain when I was on lower dose of Pred [higher GCA doses has masked it]
I think cortisone injections should be avoided if at all possible. Enough that we're all taking steroids (and I'm a believer when it comes to prednisone which basically gave me my life back) but cortisone delivered directly into our system by way of injection - I'd try just about everything else first. Acupuncture is reported to be super helpful. Haven't tried it yet for PMR but it worked wonders for hip bursitis years ago (pre-PMR)
Welcome to the club! When I was first diagnosed I needed initial 25mgs pred for a few weeks to sort out symptons before starting a very slow taper. You might try splitting your dose which some find useful.
Regarding getting back to normal - don't expect to just yet.
Key to dealing with PMR seems to be to do everything slowly - slow taper and slow return to normal.
Hello - similar story to you in that I thought I was quite fit but PMR hit me aged 65 earlier this year), and slowed me right down with the joint pain, and being unable to sleep. Got diagnosed quite quickly once I finally went to the doctors about it. He put me on 20mg Prednisone which worked the immediate miracle. I'm still working through side effects of the various pills I take, but tapering going okay, down to 10mg. From the advice of this forum I'm going to take my next stages of tapering very slowly. Glad to hear you're feeling better.
I think PMR is almost always out of the blue. Mine sure was.
I solved the shoulder thing with one of those memory pillows - not for the faint hearted. It's VERY firm and has sort of notches so that my shoulders rest in a way that they're not painful and I can fall asleep. It sounds and feels (to the hand) uncomfortable but amazingly enough it's the best!
Mine came on just like yours did. Went to bed normal, woke up to PMR mainly in shoulders but also in the hips. I was put on 13mg of Pred. First dose I took I went to bed with PMR symptoms and woke up w/o them. Amazing stuff. I am down to 1mg every other day and terrified of completely stopping. My PMR, btw, came on 24 hours after my COVID booster.
As other have suggested, if you’re not getting full 24 hours of relief you may want to consider splitting your dose and/or taking it at 2am. I did both and it worked really well resulting in symptom relief all day/night.
If you are taking uncoated pred you may also want to consider enteric coated pred, or if that’s not available stuffing your uncoated pred into empty enteric capsules. This delays the release of the medication into your system a few hours allowing you to take your dose at 11pm instead of 2 am (much easier for me).
It is quite a shock to experience a sudden onset of painful symptoms followed by a diagnosis and prescription medication (pred) that is often not well regarded for the long list of side effects. Allow yourself some time to make necessary adjustments and advocate for your health if need be.
I’ve had PMR for 4 years and am stabilized at 5mgpd. But one shoulder also played up when trying to raise my arm, which I needed to do for Pilates. Then one hip became painful amid I am listed for a replacement in Jan.24; meanwhile I have taken Paracetamol 1000mg four times daily painkiller to suppress the hip ache.
Suddenly I realised I had resumed painless use of my shoulder. I deduce that the painkiller for the hip was working even better on the shoulder!
Maybe you should try Paracetamol - it’s openly bought at supermarkets as well as pharmacies, is cheap and isn’t habit- forming. Good luck,
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