Advice on tapering please

[Hedgehogfriend]

Hello wise people, can you help with advice on tapering please? I am just about down to 4mg of prednisolone, following the slow taper plan. I was doing fine but now - taking four 4mg doses on more consecutive days - I find all the old aches and pains in shoulders and hips returning first thing in the morning.

The creakiness eases off during the day but that " feeling very old" stuff is back first thing and really for the first time since I started taking Pred 14 months ago.

The anxiety is also back, which is not good. Mood swings etc - almost like being back at the beginning of this journey.

I go on holiday to Portugal in a week's time. What do I do - stick it out on 4mg and hope it settles or up the Pred dose again and, if so, to what?

GP is good but obviously closed for the Bank Holiday so any wise words in the run up to my holiday would be appreciated.

Thank you. Chins up everyone!

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to go back to previous dose -whether than that be 4.5mg or 5mg and stay there for at least a month. Sounds as if your adrenals as well as your PMR are struggling [mood swings, anxiety]. Hopefully that will be enough… if not you might need to follow the flare protocol - have linked in case you need it -

healthunlocked.com/pmrgcauk...

Even with a slower tapering regime, my advice is never taper just before a holiday, or any other significant occurrence, no matter how enjoyable it is, it still causes some sort of stress.

Not sure if you are still reducing 1mg a time, if so, the make it 0,5mg from now on. There really is no rush at 14 months in with PMR.

Enjoy your holiday, but make sure you build in rest times…

[Hedgehogfriend in reply to DorsetLady]

Thank you for your sensible advice as always. I'm reducing by 0.5 and it's frustrating to be almost there but now experiencing symptoms again. I will do as you say and go back to 4.5 for a month and then try again. Thanks again x

[DorsetLady PMRGCAuk volunteer in reply to Hedgehogfriend]

Think I might try 5mg.... if it doesn't show improvement within a week, then try the flare protocol.. and returning to 5mg.

I know that clashes with holiday - but better to get things back under control asap - or you won't enjoy your time away.

[PMRpro Ambassador]

You are never reducing relentlessly to zero - you are titrating the pred dose to identify the lowest effective dose, the lowest dose that gives the same result as the starting dose did. And I'm afraid that being at 5mg is not "nearly there" in terms of zero pred. The pred has cured nothing - it is a management strategy to keep the inflammation created by the autoimmune disorder underlying the symptoms we call PMR under control, to relieve the symptoms, until the autoimmune disorder has burnt out and gone into remission. Only then will you get to zero pred. In the meantime, you start at a dose of pred that is high enough to clear out the accumulated inflammation and then taper it slowly to identify the lowest effective dose.

You seem to have done that very well - 5mg is enough, 4mg is not and there is some leftover inflammation there to cause symptoms. If you were good at 5mg go back there, at least until after your holiday, and then try a 1/2mg step down. One of our favourite PMR doctors likes to keep patients at 5mg for up to 9 months to let the body catch up - and find the onward journey is then easier. To be at 5mg after 14 months is ahead of the curve - half of patients take more than 18 months to get there.

[Hedgehogfriend in reply to PMRpro]

Thank you, that's very reassuring. I'm trying my best to taper but I know I need to listen to my body and preserve my quality of life. And have a good holiday! x

[PMRpro Ambassador in reply to Hedgehogfriend]

Do consider using one of our slowed tapers that are written about under Tapering in the FAQs. They are much more comfortable than alternating 4 and 5 mg which seems to confuse the body for some reason! And now, only 1/2mg at a time.

[Hedgehogfriend in reply to PMRpro]

Yes, thank you, I am tapering by 0.5 and following the slow taper plan. The symptoms started when I reached the point of one 4.5 and one 4, then two 4s together and one 4.5 and so on. When I reached three 4s together yesterday the trouble really kicked in. I'm going back to 4.5 as I have been fine on that. As DorsetLady suggested, I will stick to that for a month and also talk to my sympathetic GP after my holiday. Thanks again x

[piglette]

It is never worth trying to stick it out. PMR invariably wins.