Don't taper in pain: I have tapered from a high of... - PMRGCAuk

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Don't taper in pain

Wheelygood99 profile image
6 Replies

I have tapered from a high of 20mg in Dec23 to now 7mg. I am trying the 7 week taper to 6mg currently. I know you are not supposed to taper while in pain. I'm not in pain but I am a little achy in the mornings until a couple of hours after my daily pred dose when I feel normal again. Should I be feeling normal around the clock before I taper or should I try splitting my dose so it lasts 24 hours? Thanks for any advice.

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Wheelygood99 profile image
Wheelygood99
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piglette profile image
piglette

You should feel like you did when you started taking pred and you said Hurray it is working. You may get some aches just after reducing which should go away. You have just got to the point where the grumpy adrenals will start waking up, so you may get some side effects from them as well.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Is this a new phenomenon since you started tapering from 7mg to 6mg?

You have reduced quite quickly to get from 20mg to 7mg within as many months… so you may find you need to slow up a bit. You are not reducing relentlessly zero, you are trying to find lowest dose to give you same relief as initial dose did… and as you get lower that often becomes more difficult.

If it is a new occurrence, it sounds as if you might just be on the cusp on enough Pred/not quite enough - if that’s the case then carrying on may lead to you flaring..

My advice would be maybe go back a step on the tapering and repeat the previous week and see if it resolves itself. If not, then maybe back to 7mg and then when you try again reduce by 0.5mg even with the slower plan.

If it does resolve then carry on, but would recommend in future you opt for the 0.5mg drop… it will help your adrenals as well as your PMR.

If your doses have previously lasted 24 hours, then it sounds as if it just a tad too low now and not necessarily that you are one of those a patients who find it never has lasted 24 hours.

Obviously splitting the dose is an option for some… but like a slow tapering plan, the simple advice is - not enough Pred is not enough, no matter how or when you take it.

HeronNS profile image
HeronNS

If I were you I'd definitely taper only in half mg steps from now on. Advice always is to taper by no more than 10% of the dose at a time, and below 10 mg, even 1 mg is more than that. You cannot cut coated tablets, but if your tablets are uncoated you can cut 1 mg tablets, and also cutting 5 mg tablets to get 2.5 is useful, although I think in the UK you can get 2.5 mg tablets anyway. (I can't in Canada so found ability to cut 5 mg tablets a real boon for some time!)

PMRpro profile image
PMRproAmbassador

I'm inclined to think you may be pulling into the station for your first destination - the lowest effective dose that manages the symptoms as well as the starting dose did. You will get lower but maybe not yet and this seems a good place to slow down the rate of taper for the next stage.

Wheelygood99 profile image
Wheelygood99 in reply toPMRpro

Thank you to those who have replied. I think you have confirmed what I suspected, that I need to pause where I am for a while longer.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toWheelygood99

Yes you do, and much more slowly from now on... there is a lot more life left in your disease - and as you get lower on Pred a lot less wriggle room for taking too little.

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