Reduced 15-14mg but getting dull aches and night sweats - do I pause?

[Hopingsail]

Hi Everyone,

I have been using the lovely Dorset Lady's slow-taper - taking 5 weeks to get from initial dose of Pred 15mg to 14mg. Just finished with the whole week on 14mg and in the last couple of days have experienced a dull ache in hips/ groin, plus night sweats (and the usual fatigue and muzzy head!).

I have to admit I have been rather active, probably too much so - but with my wife in a care home not all that much choice sometimes.

Wondering if this is fairly typical? Should I press on to the next reduction to 13mg or maybe pause on 14mg for a week? I don't want to go back up!

Regards to all of you.

[HeronNS]

If I were you I think I would stop for a week. It's quite common at lower doses to pause for a week or even more after a taper, so why not try it? As you say you have to be more active than perhaps you would like it will give your body a chance to adapt to the dose. We are all different and some people metabolise pred more efficiently than others. Your 15 mg might be equivalent to my 10 mg, for example, and you may have to proceed more slowly.

Also, "It isn't slow if it works".

[Hopingsail in reply to HeronNS]

Thanks for the advice - I hadn't taken that metabolisation thought on board before but makes sense. Pause..confirms my thoughts.

[DorsetLady PMRGCAuk volunteer]

Hang on for a week or so.....and you may well have answered yourself...I know it’s not easy when you are either caring for a loved one and/or living on your own. But you need to consider yourself as well.

[Hopingsail in reply to DorsetLady]

Thanks DL - I'll give it a week to see what happens. Patience....!

[PMRpro Ambassador]

I'd mark time too - be sure it isn't going to get any worse before going any lower. But whilst I realise it is hard with your wife being in a carehome, in some ways that allows you to look after yourself better and do less or find other ways of dealing with the problem. I am a sole carer and that does tend to mean I have to stay at a higher dose, but you do have to remember that if you don't look after you - you won't be much use for your wife either.

[Hopingsail in reply to PMRpro]

Thanks for the advice- and the reminder. Only been properly allowed back into the Carehome a few weeks ago - and it's the stress of her deterioration over the past year that I am sure tipped me over into the PMR. Whilst I don't think she'll ever be mobile again she does seem to be engaging more with the visits. But even so the stress is huge... (Whilst much fuss is properly made about the Carehome deaths there is no measure of the deterioration caused to remaining residents which has been immense, plus collateral damage to the families.)

[DorsetLady PMRGCAuk volunteer in reply to Hopingsail]

Yes I’m sure that’s very true....and as we all know stress and PMR don’t make good bedfellows! ...so patience, and pacing (as much as you can) is the way forward.

As PMRpro says (from experience -like me in days gone by), the carer needs to be cared for as well, even if it has to be self care.🌸

[Pr0jection]

I'm just starting my slow slow taper to get from 7.5mg to 6.25mg over 7 weeks. If I manage to get down to 6.25 without any horrid pain I will stay there for several weeks and not try to reach 5mg (my goal this year) too quickly. Also, if during this 7 weeks taper I experience bad pain I will go back up to 7.5mg and stay there for a while as I think my body may be telling me it's not the right time to taper. Everyone is different and even my rheumatologist says that there is no set protocol for tapering off steroids.

[Hopingsail in reply to Pr0jection]

Thanks for sharing your experience - so helpful. I’ve really really missed my wife since PMR, she was always so steady and reassuring...