Adrenal glands rebooting?

[apttony]

I've now been on Pred for 18 months, coming down from 30mg to the reduction stage of getting from 7.5 mg to 7.0 mg/day using DSNS taper plan over 52 days. Now in the 4th week of this plan, feeling totally drained, extremely lethargic, and just want to sleep! Only mild stiffness and aches in both shoulders when waking in a morning, which soon clears.

Apart from suddenly feeling 100% okay, can anybody describe what the signs are that would confirm that my adrenal glands are starting to function again?

Thanks

[PMRpro Ambassador]

It really is a case of patience and waiting for the fatigue to pass - and the only way of persuading the adrenal function to return is to be on a low enough dose for the pituitary to register that and try to stimulate the adrenal glands to produce cortisol to top it up.

[piglette]

I have just been through the deathly fatigue stage. I found it is important to hang on to the current dose until the fatigue improves and the adrenals realise they have got to start working again, it just gets worse if you try to reduce.

[Marijo1951]

I went through the identical experience in early summer. It lasted a couple of months. Before then I thought I knew what deathly fatigue was but this was even worse. I had an overwhelming need to lie down at all times. I went to the GP who had me tested for some obvious things like anaemia, all of which were fine. I asked her if it could be my adrenals being slow to wake up and she muttered something I didn't understand. I was too lethargic to pursue the matter! Anyway it mostly did fade away and while it persisted I kept at 7 mg. I'm now down to 6 mg with some fatigue but far less and I think a bit less than just before the bad spell started. I saw the rheumatologist on Wednesday and she was pleased with my progress. I'm to taper slowly at my own pace - she suggested trying 0.5 mg per month - and go back in July. I asked her about the spell of serious fatigue and she said it could well have been the adrenals struggling.

[SheffieldJane]

I am on 4 mgs Pred. I think I am in the midst of my Adrenal glands waking up and it is erratic to say the least. I can snap awake at 2.30 am feeling great and ready for anything, maybe a tad lonely. I find it difficult to wind down and go to sleep at night. Then of course I am too tired to be of any use to myself the next day. Apart from my knees ( probably arthritic) and some low back pain ditto. I hardly have any PMR pain. I would say the deathly fatigue has passed, I am just properly tired from a poor night’s sleep. I usually have a much needed, almost irresistible nap in the afternoon, which I should wean myself off, but it is the best sleep of the 24 hour period. This has been going on for a few weeks now. Occasionally I feel like I don’t sleep all night. I also have periods of feeling sick and have headaches. I discussed this with my Rheumatologist today. She gave me the choice of increasing or decreasing Pred. I have opted to continue a slow taper down by 0.5mgs. I think more Pred would give me a boost but delay the inevitable.

I am also seeking an appointment with my Endocrinologist for a further Synacthen test, to ensure that my analysis is correct, and they can recover. At this stage it is hard for doctors and patients alike to know exactly what is happening. Synacthen tests aren’t very accurate apparently.

This is not necessarily going to happen to everyone. I just hope it passes soon. Any change feels like progress, I live in hope.

[DorsetLady PMRGCAuk volunteer]

It took mine about 8-9 months to get the message - but had been on much higher doses and for longer. Between 6mg-3mg using slow taper - some days okay, others wiped out for no apparent reason - complete random bouts of fatigue.

Only way really is slow tapering 0.5mg per month and slow taper you’re already using. And patience,patience, patience!

However if you feel nausea or dizziness might be worth asking to have them checked - ACTH Test - but won’t do until you’re at 5mg or below.

[apttony]

Hmmm - much as I thought it might be, but thank you all - its reassuring to hear it's 'normal'. Ha ha!

I'm usually quite active, not in a sporty or keep-fit sort of way, but different interests. DIY, gardening, pottery and sculpture, looking after my soft-top sports car. At the moment, even reading is a battle, getting through a page or two, before I need to shut my eyes! And then insomnia at night to cap it all.

[SnazzyD]

Hello. I found this level very trying. The feeling awful, if it isn’t the condition, is the adrenals not waking up rather than the rebooting of them. This level I found not enough Pred for the day’s demands but too much for the adrenal glands to realise it was time to get out of bed. At the time, my hunch was that I had to get out of this ‘grey area’ and sure enough things improved from about 6mg going at 0.5mg per 6-8 weeks to 5mg and then 0.5mg per 12-14 weeks from there. That suited me but it wasn’t a seamless glide to normality by any means.