Advice on next stage of my journey please. - PMRGCAuk

PMRGCAuk

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Advice on next stage of my journey please.

Pawscat11 profile image
9 Replies

Yet again I am asking for advice on the next stage of my PMR journey. I have taken 17.5mg pred for 4 weeks and at last felt no pain and felt stable so as suggested started reduction. I took 15mg on Monday 17.5 Tuesday and 15 today but have aches in my legs bisceps already. Can it happen that quickly? Do I go back to 17.5 or continue my alternate days or a different plan altogether? is 2.5mg too big a drop? Sorry to be a pain but you have given the best advice so far and I dont want to plod on down the wrong track again.

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Pawscat11 profile image
Pawscat11
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9 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Most likely 2.5mg too big a reduction.. if you cannot get 1mg tablets, then halve your 2.5mg to get 1.25mg - provided they are uncoated plain ones.

Personally I'm not a great fan of the alternate day regime...l think it confuses the body - and no matter how long you stay on it, you don't appear to be any further forward at the end than you do at the beginning... still on 1 day high dose, 1 day low.

With any slow taper you may have days when you have a lower and/or higher dose sandwiched, but you are gently increasing the number of days on lower doses as you go along whilst gently decreasing the number of days at higher doses.

With an alternative day taper you are doing one high, one low all the way though … slower one you are introducing the lower dose every few days, so I think easier on the body.

Hope that makes sense…

Slower tapers to chose from here if you want to go that route - healthunlocked.com/pmrgcauk...

SnazzyD profile image
SnazzyD

I couldn’t cope with 2.5mg drops at that level as even without PMR (GCA) I got aches and pains and a fluey feel. I’ve always tried to picture reduction plans as less of a jagged staircase and more of a wheelchair friendly slope. Alternate days to me were more like step aerobics forever. Even if you want to keep to the doc’s schedule, try to smooth it out with more small reductions.

Broseley profile image
Broseley

I am reducing by 2.5mg a month, now down to 15mg from 40mg initially. For the first few days of the new dose I get a few pains here and there (not constant), but after about 5 days it settles down and I'm pain free again.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBroseley

Steroid withdrawal…..

PMRpro profile image
PMRproAmbassador in reply toBroseley

And it might be worth going in smaller steps now. The basic rule is not more than 10% of the current dose - which is now down to 1.5mg, half of the step you are doing. The smaller the step, the more easily the body will adjust to the change.

Mary63 profile image
Mary63

I would suggest that instead of doing alternate days old dose, new dose (which keeps on gifting you steroid withdrawal pain), you do new dose on one day and then old dose for say six, then old dose for one day, then new dose for 5, new dose for one , old dose for four etc.

It takes about a month to get through to when you are doing new dose every day, stops the steroid withdrawal pains, and makes things overall more comfortable.

There are many versions of this kind of reduction plan.

I could never do alternate days reduction, as I was feeling as though I was on too low a dose (flaring) when in fact I was getting withdrawal pains on the lower dose days.

I wish you the best.

Pawscat11 profile image
Pawscat11

Thank you for all your help. I will do the 1 day new dose and 6 days old dose etc and reduce by 1.25mg not 2.5mg and see where I go .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPawscat11

Good luck

Pawscat11 profile image
Pawscat11 in reply toDorsetLady

Thank you

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