Exercise & pmr: Having only been diagnosed since... - PMRGCAuk

PMRGCAuk

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Exercise & pmr

Charlie1boy profile image
5 Replies

Having only been diagnosed since the beginning of the year, I am but a newcomer! I started on 30mg, and have just got down to 15mg as from last Thursday. For the first time, I can feel the beginnings of the PMR pain, but it is quite acceptable for now.

From what I read, I am luckier than most of you - probably because I am male! I have always managed to walk every day with my dog, and I go bell ringing three times a week. Also, after a three month break, I am back playing racket ball once a week; that's not that energetic, as I am 75 years old ( more social).

What I have found with any exercise is that I really have to pace myself, and plan plenty of rest. If I don't, the next day is a total write-off, and that has happened to me twice in 3 months.

Finally, some advice please. I am unsure how long I should remain at 15 mg. So far, I have reduced relatively quickly, without problems, but it realise I will need to slow down the lower I get. I am thinking of 4 weeks at 15mg, then moving to 13mg; does this seem reasonable?

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Charlie1boy profile image
Charlie1boy
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5 Replies
PMRpro profile image
PMRproAmbassador

That sounds fair enough - unless you are having PMR pain. It has to be said that I think it is equally likely that your pain is due to steroid withdrawal - 15mg is the usual starting dose for PMR so you should still be well controlled there. Did the pain come immediately after the reduction and is it improving with time? It can take anything from a few days to a few weeks for withdrawal pain to fade. Returning PMR pain usually takes some time (anything from a few days) to appear and then gets worse with time.

Using the very slow reduction here

healthunlocked.com/pmrgcauk...

has helped many patients avoid the withdrawal pain and identify the lowest dose that manages their symptoms very accurately.

Charlie1boy profile image
Charlie1boy in reply to PMRpro

Thank you as always for your helpful reply. I think that what's happening is that, as you pointed out to me at the beginning, the pred lasts for about 18 to 20 hours with my metabolism, and I notice the pain in the morning prior to taking my daily dose; now, at 5pm, it has worn off.

I cannot thank you enough for your contributions to this forum; you have given me the confidence to manage my own PMR. I guess I might have difficult times ahead, but listening to my own body has to be the way to go for me.

My wife will ensure that I do not try to reduce too quickly!!! Luckily, I have a good GP too.

PMRpro profile image
PMRproAmbassador in reply to Charlie1boy

Have you tried splitting the pred dose? Some doctors, particularly in the USA, try that. About 2/3 in the morning and the rest in the early evening (or the time that works best for you) seems to work well for some people. A bit of experimentation isn't a bad thing. Discuss it with your GP maybe.

Charlie1boy profile image
Charlie1boy in reply to PMRpro

Thanks PMRpro - this solution worked a treat. 10 mg after breakfast, then the last 5mg between 9 and 10pm. Barely any sign of pain the next morning.

I know we are all different, but this does seem to work for me.

Thanks again.

Charlie1boy profile image
Charlie1boy

Thank you. That's certainly an interesting thought, which I had not considered. I think I'll give it a go, and see what happens.

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