Adrenal Glands Waking Up ???: Are there any obvious... - PMRGCAuk

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Adrenal Glands Waking Up ???

Golf-1 profile image
9 Replies

Are there any obvious symptoms we will notice to suggest our Adrenal Glands are coming back to life?

I understand this could happen around 7.5mg of Pred and below. I am back to tapering from 4mg - 3.5mg and am not sure that my Glands have got the message !!!

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Golf-1 profile image
Golf-1
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

not sure that my Glands have got the message !!!

What makes you say that?

Very rarely do people find they switch back on when reaching 7,5mg… although that is the figure often quoted, it cm be slightly or considerably lower - and it usually gradual.

There is no great big banner saying ‘we’re on again’ - but I did feel a bit more myself when I got to around 2.5mg Pred [sluggish adrenals has caused random bouts of fatigue for previous 8 or months] but whether that was totally adrenals, GCA going into remission or both I couldn’t say.

But even when they have woken up, it can take anything up to a year after finishing Pred for them to be tip-top!

You could ask for basic cortisol test from GP surgery to see if they are thinking about it!

Info from FAQs as well, if you haven’t read -

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador

Not so much signs that they ARE, more if they are NOT! If they slowly start to take up the slack as the pred dose is reduced, you feel pretty OK-ish as you have all the time. If they are struggling, then you start to experience more fatigue and some odd effects such as dreams. Fatigue is probably the biggest factor. And there is no fixed point - 7.5mg is said to be a physiological dose and where the body MIGHT start to notice a lack of corticosteroid. But some feel effects at higher doses, some at lower and some none at all. And more recent research suggests the physiological dose is much lower, equivalent to as little as 2 or 3mg pred. You may feel OK day to day - but not under stress or with more activity or if unwell.

PMRpro profile image
PMRproAmbassador in reply toPMRpro

Meant to say - they aren't fitted with an on/off toggle switch. It is more like a dimmerswitch that slowly gets going - but gets stuck and wobbles from time to time.

SnazzyD profile image
SnazzyD

Sadly there isn’t a convenient symptom to say the shop is open. Instead it’s the lack of feeling wiped out if you do anything other than lie still. Gradually, it takes more and more to cause fatigue. Why do you think yours are still napping?

Golf-1 profile image
Golf-1 in reply toSnazzyD

I am on my third attempt at DL's tapering from 4.0 - 3.5 Pred, each time I have been here there has been some issue that has caused me to go back to 8mg, I am not sure if I am being over cautious and should stick it out if I feel a little bit worse. Hence my question.

Thank you DL and PMRpro for your answers, I have read the article and bought a dimmer switch 😉

PMRpro profile image
PMRproAmbassador in reply toGolf-1

Yes - but is it PMR/GCA related or adrenal related? It is more complicated at this level and sometimes it is difficult to decide which it is. By going back to 8mg you are throwing away any advance your adrenal function may have made and you start again. But when your body rebels at the same dose repeatedly - it is often a sign you have reached your lowest effective dose.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toGolf-1

Ditto to PMRpro’s reply..

Looking back at previous posts, you seem to have been struggling to taper for the last 8 months.. which would indicate that you are trying [unsuccessfully] to get below the level your PMR actually needs, as stated by PMRpro.

Would suggest you hold fire at current dose for a couple of months and make sure that your PMR is fully controlled and also gives your adrenals a chance to get their act together.

Many find that reducing below 5mg is much more difficult than they had envisaged. You will get there, but honestly there is no rush…

Golf-1 profile image
Golf-1

thank you both, I never have been a good patient, and have been doing fairly physical work in garden for past 2 weeks plus played golf twice (badly)

When I fill my weekly pill box this Sunday it will be 4 mg Pred all week, I will forget tapering now until February, I have Christmas and New Year coming up followed by my annual trip to visit Son in Australia early January

Will revisit tapering when I get back.

Thanks again for your support and advice

PMRpro profile image
PMRproAmbassador in reply toGolf-1

Ah well - in that case - I rest my case!!!!

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