I’ve recently been diagnosed with PMR with question mark as I’m still waking up feeling stiffness and pain despite medication 20 mg prednisolone. I take the medication first thing. The pain eases during the morning. Judging by some of the comments this is ‘normal’ Should I not be expecting to be completely pain free at all times which seemed to be implied by gp.
Very grateful to have found this forum
Some do get a miraculous response- but guidelines say at least 70% relief - so it does vary. But on 20mg you should get a good response.
Have a look at this for more info - any reason why there is a question over diagnosis? are you trying to carry on life as normal?
healthunlocked.com/pmrgcauk...
I think the dr expected a better response but maybe I’m using the wrong criteria! There has been some improvement particularly in my legs. Shoulders and arms much less so and things improve as the day progresses. Looking at some posts maybe taking part of the dose in the evening might help alleviate the morning Looking back now to pre steroids the mornings were definitely worse but the pain did lessen throughout the day
Don’t start changing when you take the dose yet - you need to take it as prescribed until you have a definite diagnosis - then you get a better picture of what’s happening. I know we do suggest it sometimes, but that’s usually further into treatment.
Many thanks
Whose is the question mark? If it is the doctor they should learn more about the illness and pred! The GP is being very optimistic that you will be totally pain-free on pred - a few people are, but most people have some left-over symptoms, especially the fatigue aspect and pain after exertion. A 70% improvement in the first couple of weeks is regarded as good and accceptable for a dx of PMR. I got that in under 6 hours in terms of the stiffness and most muscle pain but the rest, the bursitis and tenosynovitis pain took up to 3 or 4 months to go entirely. And I have days with pain if I have been doing too much.
The disease activity continues despite pred and the antiinflammatory effect lasts from 12 to 36 hours depending on the person. Every morning the body sheds more inflammatory substances at 4-4.30am and starts to develop inflammation until you take your pred dose and it takes effect. The later that is, the more symptoms you may have in the morning if you are someone where the anti-inflammatory effect doesn't last the full 24 hours.
What time do you take your pred? I take mine around 2am with a bit of hard cheese. In my case Comte!!
I was told to take it first thing in the morning. Comte sounds tempting!
Improves the pred no end!
Hi Ana-16. My experience may help. Diagnosed PMR 4 weeks ago started on 15 mg. Took them after breakfast. Symptoms ameliorated during the day but came back evening and by next morning was at pain 9+. Couldn't get out of bed and dressing was agony. CRP was 98 (inflammation marker). Same for next 2 weeks. Dosage increased to 20 mg after 2 weeks. No real discernible improvement, in fact CRP went to 106! Dosage increased to 25 mg last weekend. Massive improvement in symptoms. CRP down to 22. Still have residual discomfort in my shoulders and upper arms but I am functioning!! I now have hope! GP said that with my reaction to the increased 25 mg, she is now reasonably confident that it is PMR. I take 17.5 mg Pred at 6 a.m. and 7.5 mg at 10 p.m. with a drink of yoghurt mixed with milk. I also still take a PPI at present when I get up before breakfast (can't decide whether to stop this although I don't seem to have any side effects). I decided to split my dosage because when I was on 15 mg I did take an extra 5 mg one evening as an experiment and my early morning symptoms where much better even at that time. I do find that as the time approaches for my next dose that my shoulders and upper arms do get a bit worse but nothing like they were previously. Hope this helps. Best wishes. LBM1953
Hi Ana-16 I too was told to take the Pred 1st thing in the morning. but like you I woke up feeling quite stiff and achy. It was suggested that for some people the effect of the Pred might not last the full 24 or more hours. Thus it was not at the strength required to tackle the 4am flow of inflammation. So I decided to take it after my evening meal. This sussed the problem overnight. The only comment the GP made was that it might give me sleepless nights - it didn't. So worth giving it a go
Thank you. I will speak to my gp at my next appointment
I started on15 mg Sep 2019 and would wake up stiff and miserable so started split dosing taking 10 mg at 2:30 am and remaining 5mg around 1-2 pm which worked beautifully as woke up feeling great. I continued split dosing until I reached 10mg and opted to take full dose at 2:30 am. I am currently on 2.5 mg and continue taking prednisone at 2:30 am with great results as wake up with very little discomfort. I keep meds and water on bedside table and am able to fall back asleep straight away. I am fortunate as to not have any stomach issues therefore don't eat anything with my pill however one could have something simple like a cracker, vanilla wafer or a few animal cookies available on bedside table if needed.
Hi,My partner was diagnosed with PMR 1.5 years ago now. 15mg if pred did virtually nothing to alleviate it and she ended up on 30mg under a rheumatologist. I think the most important thing is not to expect too much at this stage. Take it as it comes and keep a diary of symptoms. Once she got her symptoms undercontre she was back to normal life within 6 weeks...
Prior to that we tried tanking the pred at 2am and lots of other things but ultimatlu it was getting the dose correct for her that made the difference. Personally I wouldn't get too hung up on what SHOULD be happening and concentrate on what is happening... Its tough because it can can hit a healthy active person out of the blue. But there us life after PMR once you get your PMR under control
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