Tapering - return of symptoms?

[Sweetbriars]

hello I was diagonosed in sept 2024 after nearly a year of excruciating pain and bilateral carpal tunnel release. Started on 15 mg tapered which was a miracle tapered to 12.5mg in Jan . I am very nervous sbout tapering and those awful symptoms coming back.

Started tapering on Sunday to 11mg and was wondering is there an guesstimate at how long it will take for any symptoms to return ? Or is it impossible to say ?

Also I was interested in the post where the rheum had advised to take pred in the evening -I can’t recall being told when to take them … I take them at 07.00.

Thank you so much for you help .

[DorsetLady PMRGCAuk volunteer]

hi,

This link explains difference between steroid withdrawal and flare - but why assume you are going to have one? Not everyone does… ..

healthunlocked.com/pmrgcauk...

And have you read through this -

healthunlocked.com/pmrgcauk...

On timings of Pred, usual advice is first thing in morning - and most are okay with that, it’s only if you are having issues we might suggest changing times…

I know it’s a scary time… but don’t assume you are going to have problems - you may not.. 😊

[Sweetbriars in reply to DorsetLady]

Thank you so much for quick reply.

Yes it’s unlike me to think I’m going to have problems - Im usually an optimist about health things but recent events …..

[piglette]

After you have reduced if you have problems within a day or so it is likely to be withdrawal symptoms from the steroids and it should improve fairly quickly, while if you don’t have problems for a week or two it is more likely that you have overdone the reduction. I found reducing by 0.5mg after I got to 10mg and 1mg just above, was a good idea. Some people are tougher than I am though!!

[Sweetbriars in reply to piglette]

Thank you yes I’m planning to use the DorsetLady spreadsheet fingers and toes crossed

[piglette in reply to Sweetbriars]

Good move!!

[PMRpro Ambassador]

Depending on what you really mean by "was wondering is there an guesstimate at how long it will take for any symptoms to return " - there isn't really an answer to that. We say you aren't heading relentlessly to zero - you are looking for the lowest effective dose, but everyone is different in terms of starting point of disease activity, how their body absorbs and utilises pred and their lifestyle which is also significant. If you work you may well need more than I do as a retiree - or indeed, if you job is physical whereas mine was little different to what I do now, sitting in front of a computer and writing ...

You may well be one of the lucky people who slowly and steadily tapers a mg a month down to 4 or 5mg and then 1/2mg to zero and the underlying cause of the PMR has burned out by the time you get there - it does happen!! Or you may shoot down the dose to 4mg and then struggle to get for months to finish it off. Or anything in between.

Probably not very helpful - that's what makes life with PMR so exciting ...

[Sweetbriars in reply to PMRpro]

Thank you - that’s as I expected TBH . I’m just so grateful the steroids relieved the pain - at it’s worst last year I just couldn’t envisage it ever stopping as no solution from drs worked !

I Retired 10 years ago when my husbands cancer was terminal he died in 2018. I definitely couldn’t be working now. I did try to go back 3 years ago but just couldn’t cope anymore - so I can go at a pace that suits but like many people here I was used to being fit and healthy with high energy, demanding job in the city and now keeping busy is my coping strategy! My Physio who ‘diagnosed’ PMR said I must lie down for at least 30 mins a day to rest properly! Thats Still work in progress!

[PMRpro Ambassador in reply to Sweetbriars]

Sensible physio! Lots of people DO have a planned siesta and can't cope without it but it is something of which I have never felt a need. But I do pace myself all the time so maybe that does the same. I have a cleaner who does the things that really bite back - changing bed linen and vacuuming mainly so she hoovers every week and does one other job I struggle with. only an hour and I can live with dust!! My husband died nearly 3 1/2 years ago - and I realised the other day how little dust there is compared with when no-one could get near his room and it just built up!!!