Am at the start of my PMR journey... thanks to everyone who has advised on other questions I’ve posed recently. What I would like to know is, when one starts out on Pred, exactly how pain free will you be if you’re on the right dose?? I started on Monday on 30mg Pred which I take with breakfast at 6.30am, so today is day 4 which I appreciate is early days... prior to that, pain and stiffness was pretty horrendous and constant. Now, from mid morning onwards I can feel some improvement, def bit more mobile and pain somewhat reduced, but still stiff and sore when get up from sitting etc. By mid afternoon, feeling even better, so know it must be working somewhat, but by night time, pain and stiffness return, so in middle of night when wake up, back to being unable to move and by morning, back to chronic pain, barely get out of bed etc. When people say they are pain free on Pred at the dose that suits them, does that actually mean 24/7 relief from stiffness and pain?? Most posts I’ve read indicate most people are up and mobile after 2 days... I can but dream! Has anyone had to go up to a higher starting dose above 30mg to be fully pain free?? How long should I leave it at 30mg to see if this dose really will work 100% or do I need a higher starting dose? Or should I just accept the limited relief I am getting and just have to leave it at that?? How pain free can one be??! Very grateful to hear if anyone else has experienced similar issues? Am seeing Rhuemy tomorrow so would like to be armed with some statistics from others with similar experience! Thank you to anyone who has time to read and reply! I don’t know what I’d do without you all!
How pain free should one be on Pred?: Am at the... - PMRGCAuk
How pain free should one be on Pred?
Apparently you can expect at least 70% pain relief. I was luckier than that - unless this is rosy hindsight. I was very skippy hoppy and quite high for a few weeks. It didn’t last, pacing activity and resting a lot is essential.
Good questions!
I've just checked the notes I made when first diagnosed some four and a half years ago.
I started at 20 mg, then up to 30 mg after six days.
As a generalisation, it was in the afternoons that I first felt some relief from pain. Overnight were the worst times, and late evening not too good.
Very gradually, over a period of nearly three weeks, matters did improve at all times, though mornings took the longest. Some days were worse/ better than others.
Not all of us react the same way, and many on the forum have experienced quicker pain relief than me, but after those first three weeks I was able to start tapering down.
PMR needs patience, and lots of rest ( if you can manage it), and tlc.
I'm sure others will be along with their experiences and advice.
Good luck.
Paddy
Hi,
As SJ says you should expect at least 70% improvement, some do get a lot more.
I think sometimes it depends on how much inflammation had build up in your body before diagnosis - that has to be cleared completely - hence the high starting dose- and maybe how your body reacts to the Pred. Some patients obviously need either a higher dose than others or more time to get the inflammation fully under control.
Then of course you still have the daily dump of substances that cause the inflammation - so early days the Pred is trying to cope with the old and new! ....and that can take time!
You may be one of the unlucky ones that doesn’t get the full benefit of the Pred dose - 30mg really should be enough - it’s at the highest end for PMR starting.
You do need to make sure the Rheumy is aware that it’s not working as well as you expected - but he may well say - give it time!
Please let us know how you get on at appointment.
Sorry to hear that you're still experiencing pain at 30 mg. I started at 60 mg as I had both GCA and PMR, and I was lucky in that my pain and stiffness melted away in a matter of hours, although the deathly fatigue persisted at full strength. I agree that you need to make your rheumy fully aware of the level of pain you're experiencing. Maybe an increase of only 5 mg could make all the difference.
I felt improvement the same day. Within 24 hours I was 80-85% better. It took about 2-3 weeks to be pain free most days. I still have a day or two a week with some soreness usually related to me overdoing it the day before. Tapering weeks also mean about 3-4 days of some pain due to the steroid withdrawal. Overall, if you don’t experience dramatic improvement on steroids, it is possible you do not have PMR. Or perhaps you have GCA as well and it will require much higher dose?
The doctors usually look for a 70% global improvement in symptoms within a week or two. That means that there might perhaps still be a fair bit of pain but the stiffness is better - if you have bad bursitis in the joints and it has been there a while it can take a long time to go away altogether. It was probably 5 or 6 months for me for all pain to go, but I had the 70% relief in hours. It isn't actually as common as you might think for the pain to be gone that quickly though.
It sounds as if you have drawn 2 short straws - you need a lot of pred for it to take effect and the antiinflammatory effect isn't lasting anything like 24 hours (it varies from 12 to 36 hours depending on the person). I get good results with prednisolone and prednisone - but with methyl prednisolone I also needed more (20mg instead of 10mg prednisolone and later prednisone) and unless I took it before bed it did nothing until after lunch and I was stiffening up again by evening.
The earlier you can take it in the morning, the less it has to do to combat the new lot of inflammation. The substances that cause the inflammation are shed in the body about 4am, taking plain white pred at 2am is the best time to reduce the morning problems. If it doesn't last 24 hours until the next dose is due it can help to split the dose, taking about 2/3 in the morning and the rest about an hour or two before you expect the pain to return. The 2am dosing time was established in a clinical study, the splitting mostly by patients who have tried it and it worked.
Unfortunately not all rheumies approve - there are some who suggest it in these sort of cases but others throw up their hands in dismay! Their argument is that taking the pred all in one at 8-8.30am has least effect on adrenal function. That applies for patients on short courses of pred and DOES allow quicker return of adrenal function - but we are on high enough doses for long enough for adrenal function to be compromised. So my argument is that we should use the pred in the way that works best for us - and in doing so we often achieve a lower total dose. Particularly since taking pred at 8am means the inflammation is well established, you can barely move and it often takes at least 3 or 4 hours to work. Half the day is gone!
It is possible you have large vessel vasculitis, rather than "just" PMR and that might need more and longer to work well. But you are also trying to continue with your normal life. And THAT makes a big difference. Your muscles are compromised by the disease activity - an underlying autoimmune condition that is making your immune system attack you own tissues because it doesn't recognise them as self. That continues in the background, the pred is just mopping up the mess, not stopping the tap dripping. As a result your muscles are intolerant of acute exercise and you probably have a permanent case of DOMS, delayed onset muscle soreness, which is never recovering before you ask them to do more. A bit like running a long distance race without training first, then going out every day and doing it again.
But really you have to see the rheumy tomorrow and discover what variety you have been assigned to! They may decide it isn't PMR at all. They may be the sort who thinks everything on tinterwebs is evil and woo. That patients know nothing. We just live with it all.
The one thing you do have as a positive though is that pred IS making a difference, albeit still small. That does suggest it isn't fibromyalgia since pred has no effect there.
All the best tomorrow and tell us how you get on.
It might help to split your dose. 2/3 as early in the morning as you can manage...4am if you can bear it. That will catch the early morning ‘dump’. Then 1/3 in the early eve which might help more with the night time.
Good luck
I still take my medication at 02:00am with yogurt or a small banana and it works very well ...
YuliK 🌹
Thank you so much to everyone who replied ... the information contained is invaluable and I’ve learned a huge amount. I’m so sorry I didn’t reply individually, not a good day yesterday... but onwards and upwards as they say.....
Never feel you have to reply to everyone separately. If we have replied to this thread we will be notified you've posted and can see the general comment. Different if someone has made a specific point you want to talk about.
I am three months in with PMR. It took 5 1/2 days to feel like a spring lamb with no
Pain and stiffness. I found that when I took my 20mg of prednisone in the morning with breakfast I was sore at least until lunch. I’ve reduced now to 14 1/2 mg which I take with yogurt at around 2:00- 3:00 am. I have everything set out on a night table before bed . That REALLY helps me with mobility come morning !
One month
On one dose and yes..I split my does and take the first real early in the mornings
Discomfort, not pain, is what I have after 3 and a half years of Pred. Now down to 5.5 daily, the lowest dose that controls the discomforting malaise, fatigue and minor stiffness from becoming painful.
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