Advice re tapering please

[Fudgethecat]

I'm on this site as my partner has PMR and I find all the info given very helpful. He relies on me for all things medical and has also nominated me to control his Pred dose. He has now been on Pred since diagnosis in Feb 2020. Starting dose was 15mg, increased to 20mg as needed more to control pain. Since Feb 2020 he reduced successfully to 6mg by August this year. This was using the 5 week DSNS plan once he got below 10mg. Since 'retiring' in 2019 he was still working from home a few hours a week for his previous employer in Abu Dhabi. They asked him if he would be willing to return for three months to help out during a very busy time in the autumn and he agreed as he felt he would be able to cope, (he had refused in 2021 as didn't feel up to it). He went off on 17th September, armed with three months supply of Pred (plus extra for emergencies). Despite my misgivings, he managed full time office based work (8-10 hours a day, 5/6 days a week) amazingly well with no return of pmr symptoms. He remained on the 6mg dose throughout, as we both knew it was not the time to start reducing. Having returned home on 17th December and knowing we had a very quiet Christmas (just the two of us and I was cooking) we thought it would be safe to start the next reduction to 5.5mg (on Christmas Day! However, after the first two weeks he reported the start of aching hips and wrists (which were part of his original symptoms). So we've gone back to 6mg this week. Should we stay at 6mg or try again at 5.5mg at the same rate, or try using the longer 7 week taper? I'd really appreciate advice. He's had no contact from the GP since late 2020, apart from a call from the receptionist in August to ask what dose of Pred he was taking! The GP needed to know for the letter he had to take with him to explain his condition and why he was travelling with so much Pred in case he was stopped on entering the UAE. Sorry for the long ramble but thought you needed the whole story. Thanks in advance,

[DorsetLady PMRGCAuk volunteer]

hi,

First mistake …..”we thought it would be safe to start the next reduction to 5.5mg (on Christmas Day !)

never a good idea as you have discovered ….. it was always a no go zone for tapering throughout my GCA….especially if a long haul flight involved…

Think you need to bite the bullet and treat as a flare -explained in this post- dithering about with tiny increases rarely works -

healthunlocked.com/pmrgcauk...

He can drop back down to 6mg, not 5.5mg as that was were the problems started….

..and maybe have a look at this re adrenals, which may also be faffing about, so add in an extra issue or two. Slow tapers will help both - you might want to do the 7 week one on the first attempt to get from 6 to 5.5mg

healthunlocked.com/pmrgcauk...

[Fudgethecat in reply to DorsetLady]

Thanks for your input - I was thinking it could possibly adrenals faffing too. He’s telling me his symptoms are ok now he’s been back on 6mg for a 7 days so we’ll stick at 6mg for now but definitely try the 7 week taper at the next attempt. He’s done so well so far so am happy not to rush.

[DorsetLady PMRGCAuk volunteer in reply to Fudgethecat]

okay - hope you’re right -but maybe stay put for another couple of weeks to really make sure, before even considering a taper.

[Fudgethecat in reply to DorsetLady]

Yes, I’m planning of sticking at 6mg for a month and see how he goes before trying again. Thanks again 😊

[PMRpro Ambassador]

It may be coincidence - you are never reducing relentlessly to zero and it is possible that he has reached his lowest effective dose which is what he IS looking for, However - there are not a few rheumies who advise not trying to taper the dose during the winter. It is hard enough anyway, he'd just come back from roasty toasty climes!

[Fudgethecat in reply to PMRpro]

That’s true - the point about sunnier climes hadn’t occurred to me. Think we’ll stay on 6mg for the time being. Thanks for your swift reply 😊

[PEC2 in reply to PMRpro]

I have been on.pred for 2 plus years starting at 15 mg. I am now at 1 mg, and the plan is to taper to .5 for a.month and stop after a.month. I am worried about the hard stop. Does anyone have experience with this kind of schedule? Do you eventually have to come to a hard stop? Thanks so much. The experience of this group has really positively impacted my journey.

[PMRpro Ambassador in reply to PEC2]

I'd ask this as a new post - see what others do and only I and DorsetLady are likely to see it here.

If it were me, I would stretch out that last 1/2mg over a long slow step of one of the slowed tapers so you go slowly from 1/2mg every day, through zero once every several days, to every few days, to every other day and then increasing amounts of zero.

[PEC2 in reply to PMRpro]

Thank you! At the risk of being obtuse...so maybe adopt .5 for 4 weeks, then to .5, 4 times a week, (for a week or two or more?), then 3 times a weeks for a few weeks and down to zero? Does seem prudent? I am fine.to go slow. Thanks for help with this.

[PMRpro Ambassador in reply to PEC2]

Yes, something like that, make steps in it, don't just jump off the cliff ...

[PEC2 in reply to PMRpro]

Makes sense. Many thanks.

[DorsetLady PMRGCAuk volunteer in reply to PEC2]

Agree with PMRpro about reposting - but I did 1mg to 0.5mg with my slower taper, and then 0.5mg to zero with the slightly longer one.... no issues - been in GCA remission for over 6 years...

but I was on Pred for longer than you, nearly 4.5 yrs, partly due to GCA doses, and partly due to not rushing/or being rushed off them.

[PEC2 in reply to DorsetLady]

Thank you DorsetLady. When you say you did a.slow taper at .5 what does that mean? A month, or two or more ? I know we aarenot supposed to calendar watch, but some ball park timeline would be great if you could share yours.Many thanks.

[DorsetLady PMRGCAuk volunteer in reply to PEC2]

See my tapers - 1. over 5 weeks, 2. over 7 weeks, 3. over 14 weeks (for very difficult patients/disease)-

healthunlocked.com/pmrgcauk...

Mine was usual 5 week one which I had been using since 6.5mg...and final one to zero was over 7weeks...

but at such low doses there is no rush, and as many have discovered, 0.5mg can make an enormous difference to everything under control or not..

[PEC2 in reply to DorsetLady]

Thank you.

[Theziggy]

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