how long should one wait between tapers? - PMRGCAuk

PMRGCAuk

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how long should one wait between tapers?

humlies profile image
14 Replies

Hallo wonderful people, I completed a Dorset Lady taper of pred. from 7 1/2 to 7 mg. on February 29. All seems to be fairly static, and although I know we are all different, is there any reason why I should not start another taper? Can one actually start another taper as soon as the previous one is finished? I'm sure there must be answers to these questions somewhere in previous posts, but I haven't been able to find anything. Thank you so much.

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humlies profile image
humlies
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14 Replies
PMRpro profile image
PMRproAmbassador

I say in the DSNS taper that if you feel well and haven't had any problems there is no reason why you can't just continue with the next taper. If you feel unsure or want to be extra sure, wiat a few weeks to be sure it is still enough - and the lower you get the more likely it is to be useful. It isn't a race, your adrenal function needs time to wake up.

humlies profile image
humlies in reply to PMRpro

Thank you PMRpro; this gives me the confidence to start another taper. Even the feeling of having a double decker bus (slight exaggeration) on the base of my skull is beginning to improve; I am wondering if this could actually be the an effect of the medication.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

I found most of the time I could go straight from one taper into another.

But if I knew there was something on the horizon , like Christmas or holidays (remember them?), I’d hold off on starting a new taper until afterwards.

As PMRpro says you need to do it at your own pace, and when you feel okay.

humlies profile image
humlies in reply to DorsetLady

Thank you Dorset Lady - and thank you for the taper charts. Yes, I do find that I am not as good at coping with stress as I used to be....

Temoral profile image
Temoral in reply to DorsetLady

Hello again...could you tell me how to find the article you wrote on taking steroids spaced over the day rather than all at once in the morning please...and tapering charts..thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Temoral

Actually with GCA, you should take your Pred as one dose per 24hrs….over the years there have been discussions about splitting dose, but generally most doctors agree on one large dose rather than smaller ones - unless there is a very good reason to change things. Certainly at the beginning, GCA seems to need the bigger hit in one go.

Or did you mean this? -

healthunlocked.com/pmrgcauk...

I have attached tapering plan, but shouldn’t need that early days when on higher doses, unless you really suffer from steroid withdrawal symptoms…which should only last 2 or 3 days at the most.

The tapering plans come into their own when you get to lower doses and there isn’t as much ‘spare’ Pred sloshing around your body.

Initially in both GCA and PMR the high doses are used to control the built up inflammation at the same time as controlling the day to day shedding of substances that cause the inflammation - and your illness is still very active. Once things settle down, you can (in GCA) reduce reasonably easily until you get to low 20s or teens.

healthunlocked.com/pmrgcauk...

Temoral profile image
Temoral in reply to DorsetLady

Thank you....I had reduced to 20...then symptoms returned...but had also had Pfeizer Booster on same day...hmm. interesting that it was also mentioned that on reduction week it is possible to maybe alternate the higher and lower dose to ease the change...So glad to see you are living a steroid free life. Inspirational.

Mazxstitch profile image
Mazxstitch

I started on Dorset Lady's 5 week taper on the 29th June 2020 and have never paused between tapers. I was on 10mg when I started and am now on 4.5 / 5mg.

humlies profile image
humlies in reply to Mazxstitch

Thank you for giving me confidence to begin another taper tomorrow! I assume that you always taper by 1/2 mg rather than the 1mg. recommended by the NHS.

Mazxstitch profile image
Mazxstitch

Yes, 1/2mg over 5 weeks. I followed doctor's instructions for 15 months i.e. 1mg down every 2 weeks. Started at 15mg, yo-yoing up and down with lots of pain, came down to 10mg

humlies profile image
humlies in reply to Mazxstitch

Yes thank you for this; it seems a good guide to follow.

PMRpro profile image
PMRproAmbassador in reply to Mazxstitch

You would probably not have had the yoyo effect had the reductions been 1mg every month at the start - mor than 1mg per month is known to be a predictor of flares.

Boyd0222 profile image
Boyd0222

I think everyone is different but as someone else stated, I taper slowly alternating each day at first for around 5 weeks. Then I wait several weeks, staying on the tapered dose sometimes as much as 6 weeks before tapering again. This seemed to minimize the symptoms for me. I am down from 20mg to 6mg 1.5yrs.

humlies profile image
humlies in reply to Boyd0222

Thank you! I haven't done the maths, but it sounds as if you are tapering by one full mg. each time rather than by half??

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