I “belong” on the NRAS site as I have psoriatic arthritis. I was put on prednisolone when all this kicked off in 2018 and have been on it at varying doses ever since. I’m on a new drug - Rinvoq- and it has enabled me to get down to 2mg without a flare- way lower than ever before.
I’m so excited at the prospect of actually getting off pred but want to know how best to proceed.
I’ve been on 2 for a week and was thinking of just having one day next week on 1.5 then slowly increasing the number of days on 1.5 and doing it that way.
I don’t think the issue is a flare of my arthritis because I’m pretty sure the rinvoq is doing all the heavy lifting there.
It’s more that I don’t know for sure what state my adrenals are in. I’m guessing there must be some activity if im down to 2 with no ill effects?
Would be so grateful to hear from you!
Bon
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Bon1
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Your reduction plan sounds very similar to what we suggest anyway…. so good luck with that.
As for adrenals, if they aren’t causing you any issues, then they are probably doing something… how well no one can say for sure.. and we do always remind patients that after a prolonged time on Pred, they can take anything up to a year to be back to 100% so do be aware of that..
It sounds like so far so good. If they are not working you know about it and life becomes more exhausting than it should be. Just be aware that something out of the ordinary like illness, increased activity or a schock when you suddenly need an extra cortisol output might overwhelm their capacity. So keep Pred with you and wear medic alert items like a bracelet/necklace containing your Pred info in case you are not able to speak for yourself when away from home. It took about 18 months for mine to recover after Pred but I suffered all the way down from 7mg so hopefully you will have an easier ride.
You could get your GP to have a look at what your adrenals are doing by checking a basal cortisol level - cortisol done on a blood sample taken between 9am and 1pm.
If you have a basal cortisol of under 100 nmol/L you are almost certainly adrenally deficient, above 450 is normal. Since you are still on 2mg pred, there is still the possibility it is suppressing cortisol production so a low value may improve as you reduce the pred dose further and the level of the basal cortisol between 100 and 400 indicates what sort of degree of recovery there is already.
Doing this test can be done by the GP with a simple blood test - no need for them to book a synacthen stimulation test which is done at the hospital - it gives you an idea of progress and can be repeated as the pred dose gets lower to see if your adrenal function is recovering.
But as Snazzy warns - you may be fine day to day but not if you are under stress of any sort or taken ill. In that case, watch out for wobbles due to adrenal insufficiency. If you feel really unwell, call 999 and tell them it may be a potential adrenal crisis - and make sure your friends and family know to take you coming over all funny seriously.
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