tapering….again

[Calliope22]

I am down to 1mg per day; each taper has resulted in few days for my adrenals to catch up but this time (from 1.5mg) is proving much more difficult. How long should I give it? I could try 1.25mg but am hoping to avoid a 5mg boost

[DorsetLady PMRGCAuk volunteer]

day; each taper has resulted in few days for my adrenals to catch up but this time

Are you sure it’s adrenals and not too low a dose? ..and are you using a slower tapering plan?

It be inclined to return to 1.5mg pronto just in case it’s the latter - stay there for a while - and then try a smaller drop as you suggest. ..provided you catch it in time before it does become a flare.

You have very little in your bio, other than this is second time with PMR so as you know the last tapers are much more difficult- and slowly, slowly is required.

[PMRpro Ambassador]

There is a difference between returning adrenal function and the usual adjustment to the dose and, at some point, going below the dose you need to control the PMR.

The 5mg boost is for a FLARE of PMR symptoms because the dose is no longer enough to manage the inflammation and it is building up again. Adjustment to the dose doesn't require the 5mg boost - that will only postpone the evil day, you have to go through it at some point, And the same applies now you are in the realm of normal adrenal function having to establish itself. The 5mg boost will sort the adrenal insufficiency problem but it will slow down the adrenals producing their own cortisol.

The tough point is that at some point you HAVE to accept a period of feeling pretty ropey until your adrenal function gets it right. The smaller the adjustment it must make, the less you are likely to feel it. And the longer you spread the change over, the less it will affect day to day functioning - repeating each step of a slowed taper several time means most of the week you will feel not too bad if the days at the lower dose are spread out.

[Calliope22 in reply to PMRpro]

Thank you all very much, I’ll try 1.5mg again; I have been tapering at 0.5mg per month( or more) and it was going very well but I may need to make it even slower or go in 0.25mg steps

[piglette]

With adrenals you should not need to increase the dose unless it us really intolerable. However if it is the PMR you should definitely stop reducing and think about increasing.

[PMRnewbie2017]

I'm at your dose level and it is really tricky for me at the moment. Go back to 1.5mg and sit there for a week, Then you aim for a dose of 1.25mg, reducing using DL's taper which will take you a minimum of 5 weeks to complete. If you have a week where you struggle on the 1.25mg days repeat that week . I have had a breakthrough by taking my dose at 9.30 am rather than early because I'm great in the morning but rubbish by 3pm on the 1.25mg days. Once you are totally on 1.25mg I would sit there for another month before staring a new taper to 1mg.

If you get aches and they are caused by adrenal issues, take some pain killers. If they work then it is likely to be AI (adrenal insufficiency/ HPA axis dysfunction). If the pain killers don't work then you are not taking enough Pred and you are not fully in remission from PMR. I hope this helps.

[9lives]

hi,

Sorry to hear this , it’s so frustrating when you are so close to 0 pred.

I’m where you are too. I stayed at 1 mg for a year and this January started to reduce, very very slowly but to no avail. I was getting aches in arms and neck. Long story short I’m back up to 2 mg and every thing is fine again. Maybe you are on too low a dose ?

It’s a tortoise race I’m afraid , but patience is a virtue so I’m told x😬

Carole