Diagnosed in June 2020, started on 20mg Prednisolone, I have been coming down every 4 weeks by 2.5mg. I started having a few odd twinges of aches and pains on 15mg. In the last week I have come down to 12.5mg and have had more aches and pains. I've had pain in my neck on the left hand side which I thought was down to sleeping in a bad position but its not going away, muscle cramps, back pain, aching thigh muscles and pain in my hip joints in the last few days, today the pain is enough that I have gone back up to 15mg in the hope it will help.
I have not seen a doctor since diagnosis this has been handled by a very competent paramedic at our practice and with the practice pharmacist. I had blood tests last week to check inflammatory and infection levels and they've come back as satisfactory according to the receptionist. Seeing the one and only doctor isn't an option for various reasons, also because he didn't pick up on the inflammatory levels in October when they were raised it took the paramedic to do that!!!
Any advice would be appreciated. Should I stay on 15mg for a few days or just up it when the pain is bad?
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jaybee58
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If you had aches and pains at 15mg it was a sign you weren't ready to reduce any further. Unfortunately the blood markers are not reliable - they must always be taken in conjunction with symptoms and symptoms always carry more weight. The approach they have used is OK as far as it goes but must be adjusted for the individual patient.
It's possible you needed longer at 20mg, certainly longer at 15mg and that from 15mg you need to try smaller steps reducing - for comfort they shouldn't be more than 10% of the current dose so most of us think 1mg at time is a better idea from 15mg.
But I do have to ask - when you felt so much better did you try to go back to your normal pre-PMR activities, trying to catch up? Sorry - but you can't! You aren't cured, the pred is just managing the inflammation to give you a better quality of life, and the actual underlying disorder is still active, attacking your muscles and body tissues and leaving them intolerant of acute exercise. You can still do things - but carefully and with pacing.
Thanks for the replies. I haven't changed my activity levels, apart from coming out of lockdown and going back to work which is only 4 hour shifts but most of them spent on my feet as I work in retail. Apart from that I've carried on pretty much as normal. I think I will ring my practice on Monday as see if they can prescribe 1mg for me and come down more slowly.
" I haven't changed my activity levels" - and then you tell us you went back to work!!
That would be enough to finish a lot of us! You have a new normal now, probably 50-70% of what it used to be and even then you have to build up to it slowly, you can't just go out and have a pre-PMR normal day of activity.
Ditto to PMRpro’s comments....and maybe re-read link the link I sent in reply to your first post - it might make more sense now you are a little way down the line.
Often it’s reckoned a good plan to stay at the starting dose for 12 weeks, then reduce gently using the dead slow almost stop system. I normally let my body get used to the new level for at least two weeks before moving on to the next reduction.
Seeing as it went wrong, I’d suggest starting again from wherever was working - maybe 20mg - and this time coming down in smaller jumps using DSAS so you can monitor if it’s starting to go wrong again. If it does then go back to the previous level where there was no pain, sit there for a bit and then start down again.
Each level takes time for your body to adjust. You’ve stopped making your own cortisol and are relying on Pred to fill that space.
There’s no rush - slower works better long term. I should know - I got down to zero but whizzed through the last couple of mg without that vital settling time. I was fine for a while but then PMR came back with extra bits for fun - terrible problems with my hands as well as hips etc. I went back to 5mg but it wasn’t enough so started again at 8 at the end of August and am now on 7.5 working down to 7mg, monitoring carefully.
I’m an impatient person generally so this is a life lesson for me! I’ve been on pred since 2016. No rush. It’s better than PMR!!
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