1mg Pred: been on pred since 2016 had various flare... - PMRGCAuk

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1mg Pred

villa1950 profile image
17 Replies

been on pred since 2016 had various flare ups have over the years now got down to 1mg daily after taking Lansoprazole for a few months I want to come of pred now for good what is the best way to do this? I was looking at dropping one tab every 3 weeks till I’m down to nothing any ideas please

John

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villa1950
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17 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You could try that, but if you have the plain uncoated tablets they can be cut in half - so you could try going down to 0.5mg initially which might prove easier than going from 1mg to zero.

Another option is to use one of the tried and tested slow tapers we are always taking about on here - again to 0.5mg initially.

Two here for consideration-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

villa1950 profile image
villa1950 in reply to DorsetLady

Yes I’ve got uncoated tabs how long will I need to stay on 0.5mg before I start to drop a tablet?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to villa1950

How long have you been at each dose up to now?

But probably a month or so….it really depends on how you feel… and many have found that even 0.5mg can make a difference between controlling PMR and not.

villa1950 profile image
villa1950 in reply to DorsetLady

I’ve got down from 8mg to 1mg in 6 months with no side affects or PMR pain I’m going to drop 1 tablet (1mg) every month and hope for the best wish me luck! Thanks for your help

villa1950 profile image
villa1950 in reply to villa1950

Second thoughts I’ll give it a rest for a few months and then try again

Thank you everyone for your input it’s been really helpful

John

Charlie1boy profile image
Charlie1boy

I certainly went down by a half mg, and it ultimately worked.

LemonZest11 profile image
LemonZest11

I was even more cautious, .25mg reductions for me. It's tricky to cut them in quarters, but if you complete one tablet before cutting another, you get the dose over 4 days. But that's me, a scaredy cat 🙀

Raven1955 profile image
Raven1955

Like you, I've been fighting PMR since 2016 and and like you finally got down to 1 mg a few months ago. I've been gradually getting down to .5 mg . It took me these many years to get to this low level and I'm in no rush for the "final" reduction. Besides, once you're at 1 mg or less the side effects from prednisone are minimal or none. Rushing to zero carries a bigger risk of flare than any possible side effects at this low level. In a perfect world I would get down to zero predisone sometime in May - I'm reducing ultra slowly. And if I decide to stay at .5 mg or 1 mg for another year I don't see the harm - only positives.

Polygolfer profile image
Polygolfer

I went down 1mg every six weeks (following Rheumatologist plan) and then 0.5mg for 4 weeks and alternated 0.5mg and 0mg for two weeks then stopped. This was six weeks ago, just back from 3 weeks of skiing, play lots of golf, gym etc. so far so good.

Had some aches and pains early on but just reduced activities as was advised of possible withdrawal symptoms. So far so good.

Good luck to you!!

GerriMc profile image
GerriMc

I’m the same, I was on one tablet for months and doing fine then had a flare and I’m now on two. I seem really stuck now. I’ve tried using the really slow taper to get to 1.5 but after a while the symptoms start to creep back. It’s very frustrating.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to GerriMc

It may be frustrating - but unfortunately if your PMR is still active it still active, no matter how you try to reduce.

I’d stay put for now, forget about tapering, so reducing any stress you are putting yourself under [even if you don’t realise it] and give it another go in 2 or 3 months.

GerriMc profile image
GerriMc in reply to DorsetLady

Thanks, yes, that’s what my rheumatologist says too.

PMRpro profile image
PMRproAmbassador in reply to GerriMc

Do you mean 2mg? Tablets come in several sizes! But it will come - if you don't learn anything else with PMR you learn patience!

GerriMc profile image
GerriMc in reply to PMRpro

Yes, 2mg. I know I should be more patient. Rheumie says not to worry about it. I’ve had it since 2017. I should know by now. My mother in law had it for over ten years.

PMRpro profile image
PMRproAmbassador in reply to GerriMc

If I could get to 2mg I'd never bother again about tapering!!!! Taking the stress away often makes the difference!

GerriMc profile image
GerriMc in reply to PMRpro

That makes so much sense, thank you.

Exflex profile image
Exflex

From 1mg I reduced by 1/4mg every 4 to 5 weeks using Dorset Lady’s slow taper. Best of luck.

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