Between starting Steroids in July 2023 and going on holiday in November I had put on a stone and got sluggish and I was still tired and inactive. Three weeks' warm sunshine and some peace and quiet and I lost half a stone and got to regularly swimming a mile a day and clocking 10,000 steps.
I dropped to 10mg (from 12.5/10 alternative days) on 7 December (2 days after I got back).
But now trying to keep even half as active as while I was away, and the PMR is creeping back in - buzzing/pain in my calves and arms and heavy weight/aching in my shoulders/upper back.
So, am I overdoing it? Is this the effect of the reduction in Pred and I need to wait it out? Is there a juggling act between Pred and activity levels and could I just choose to (say) go back to 12.5mg for another couple of months and be more active. Is it the activity levels or the associated stress of adding exercise into an already busy life (for me.. I am retired so "busy" is relative I know!).
Any thoughts would be much appreciated. Thank you!
Written by
Curious101
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Are you overdoing it? Yes! It’s hard to take but you cannot and must not return to previous levels of activity without suffering for it and reducing your dose while in pain is asking for trouble. The key is to introduce exercise and activity slowly in order to give your body time to adjust to the lower dose-listen to your body. This is not what you want to hear, I’m sure, but please understand that pacing and patience is key. Please read this:
Yes probably overdoing it… but alternate days of 12.5/10 isn’t the easiest way to taper…. Better a 1mg drop [or cut your 2.5mg in half provided they are plain white ones to give 1.25mg] …
123-go has kindly linked my “flare v steroid withdraw’ post as well as one on pacing, but maybe also read this intro one - which give a broader picture of love with PMR
..and yes for now return to 12.5mg until new year to get back on track… and although you probably thought it was okay to reduce just after holiday, it probably would have been better to leave it a week or so.. there very often is a bit of a dip down in energy/mood afterwards, which is much more pronounced when you have an illness..
It often feels that when a really successful holiday (it can go the other way) ends that somehow the magic will continue when one gets home. It is easy to feel that if the body can do it then it should be able to do so now, stands to reason. But no, not necessarily, particularly if you were over doing it in the first place.
Dropping by 2.5mg in one go ie 20%, is a big ask for many so 1mg would be less hard on the body. It’s not just the PMR to consider but the change the body has to go through to adjust as Pred affects everything.
While you were away in the warmth - did you also eat differently? The UK and its horrid weather is a great incentive to eat warming carby food - and in warmth they don't feel right so we eat salads and veggies instead. And that is the right way to go when on pred.
And the comment "some peace and quiet" speaks volumes to me - what is going on in the UK that made you feel the beneficial effect of that being absent? I don't necessarily want to know the details - but think about it,
And I back the tapering comments - alternating doses with a realtively large difference is hard work on the body. There are gentler ways of reducing the dose.
Thanks for this too. Yes, I've been thinking about what I eat and trying to cut down on carbs where I can (sugars /bread/potatoes etc) - that's a whole new adventure.
I'll need to get some 1mg Pred I think because my 2.5's are coloured ones fortunately my GP is brilliant.
Yes "peace and quiet" is all relative. I do get stressed by very little! PMR has given me self-justification for saying no and telling people "I'd rather not". But on Pred I have more energy than any time in the last few years.... until I don't. I seem to suddenly drop off a cliff.
Why do they do this - the plain pred are absorbed within an hour from the stomach, the coloured enteric coated ones are not absorbed for 4 to 5 hours, having passed through the stomach to the lower GI tract. If you need all the dose at once to achieve a peak level in the blood to get a decent result it really messes with things. You would be better to get a pill cutter from the chemist (or Amazon) and cut the 5mg tablets. Then all would be absorbed at the same time. But yes - you do need 1mg ones too,
Pred gives you a false sense of energy so it is very unreliable - you think you are fine and then you suddenly hit the brick wall of fatigue. It happens without pred too when you have PMR but the pred encourages you to get into more inconvenient situations for it to happen!
The PMR mantra is rest, rest, rest. Of course exercise is important for everyone, but definitely don’t even attempt to go too far. The PMR will turn round and bite you.
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