Reducing Pred below 5mg: Hi I've been on Pred since... - PMRGCAuk

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Reducing Pred below 5mg

Myosotis
Myosotis

Hi

I've been on Pred since having mild PMR leading to not at all mild GCA in 2015. I've had no flares, but got stuck at 6.5mg for about 18 months due to a lot of stress in my life and also minor headaches when trying to reduce. Rheumy agreed I shouldn't try to reduce further at that time.

I last saw him last February when he suggested I could aim to reduce to 4mg by October, though I'll be seeing him again mid-September. I decided to follow my own double-slow version of DSNS by reducing .25mg at a time, approx. 2 weeks on each level with 1 week alternating doses, so a 3 week cycle (even longer for the first .5mg). That has been working well, and has got a lot easier once I was below about 5.75mg. I suppose my body's own steroids may have started up? I'm now between 5mg and 4.75mg. I'm using enteric coated for the whole mgs and uncoated 1mg to break into bits for the .25 and .5 parts.

It's easy to think I can just carry on like this with no problems, but the preportional reduction is getting larger and I will soon be at a level where even .25mg is more than a 10% reduction. Also so many people report having problems at this level. I'd appreciate advice on how to go from here.

Thanks

9 Replies
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PMRpro
PMRproAmbassador

Steady as she goes I'd say - cross the problem bridge if and when you get to it but as soon as you notice any problems stop and consider what now. And if you really can manage 1/4mg you can always slow the taper even further - the problem tends to be where you expect your body to accept changing from every day one dose to every day the new dose without being gentle about it.

Though I suspect once one's adrenal function has gone through its staged return to work, it copes very much better with changes in pred dose. That is probably why Rod Hughes technique of keeping patients at 5mg for some months allows the rest to be easier.

Myosotis
Myosotis
in reply to PMRpro

Many thanks, PMRpro. I'll try to make sure not to rush the reductions. It's so easy to be tempted to cut corners when things seem to be going well.

Hidden
Hidden

I am currently on 8mg and this is on a 4 weeks basis. Down one mg every 4 weeks seems to be working for me. You could try going down 0.5mg every 4 weeks to help with cutting pills in half. Good luck

Myosotis
Myosotis
in reply to Hidden

Thanks, Balfron42. I could do .5mg every 4 weeks until I got to 6.5. After that I got stuck and going down just .25mg every 4 weeks seemed all I could manage. I don't mind cutting the pills. I've managed to shorten it to about 3 weeks since then.

By the way, do you live near me? I live not that far from a place called Balfron to the north of Glasgow.

Hi mysotis

I live fairly close to you in Strathblane

Well done you for getting so low.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Agree with PMRpro, at these low levels the Pred is doing you no harm, but still a lot of good.

So for you illness and the sake of your adrenal glands the slower you go the better really.

If you can cut 1mg plain tablets into 0.25mg then don’t worry, by the time you get that low things will have settled a bit more.

Myosotis
Myosotis
in reply to DorsetLady

Thanks, DorsetLady. That's very reassuring. I'll try to resist the temptation to rush things now that things are seeming easier. At least I've got past 6.5mg where I was stuck for so long, so I'm heading in the right direction.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Myosotis

Good.

All this is really helpful... From a 7.5er. Thankyou

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