When do the adrenal glands 'switch off'? - PMRGCAuk

PMRGCAuk

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When do the adrenal glands 'switch off'?

Booboos171 profile image
22 Replies

Hi, i have another question for the experts please! I've read lots of the posts on here and feel I'm so much more informed about PMR, so pleased I've found this forum.

I think i have read that at around 3 weeks into taking pred, the adrenals switch off then wake up again when the dose is lowered to around 7mg, i may have got the figure wrong though. Could someone please tell me if this is correct and what, if any changes we may notice? I'm currently still taking 15mg and hope to taper down to 12.5 in a few weeks.

Many thanks in advance.

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Booboos171 profile image
Booboos171
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22 Replies

Hi

Yes after about three weeks the Adrenal Glands start to switch off as they are getting a regular dose each day so they ‘go to sleep’

We need the equivalent of approx 7mg (maybe up to 10mg per day) under normal circumstances, you may read on here that we describe that as the ‘physiological dose’. Once we get below that dose we hope that the Adrenal Glands will start to kick in again, some l’m afraid are slower than others.

Sometimes it is necessary for a Synacthen Test to be carried out to see if they are or are capable of working again but that isn’t something to concern you at this time.

There are fuller scientific explanations but that’s it in layman’s terms.

Hope That Helps.

Kind Regards

MrsN

Booboos171 profile image
Booboos171 in reply to

Thank you MrsNails. Ah so i did read correctly, i have read so much recently on PMR and Pred that i wasn't sure how much actually registered!

Do most people notice any changes when they switch off then kick in again? I just want to understand then hopefully be prepared!

Thanks again

in reply to Booboos171

Morning, no l don’t believe you notice anything when we are on the high dose but l’m afraid that as we drop at around 7mg the signs are more noticeable, people complain of fatigue & what sometimes feels like the PMR symptoms again.

It’s important to pace yourself once you reach this dose & following a Slow Taper Plan helps.

There will be more people along who’ll describe it in more detail but l think you shouldn’t be looking too far ahead but concentrating on now as it may not have a big impact on you.

Regards

MrsN

Booboos171 profile image
Booboos171 in reply to

Thank you, and you make a good point about not looking too far ahead! I just like to be aware of what to expect 😏

in reply to Booboos171

You’re still at 15mg so you’ve a while yet before you reach 7mg.

I hope that you are feeling the benefit of the Pred & starting to feel better but do take it steady, rest & relax to let the Pred start mopping up all that inflammation.

MrsN

Booboos171 profile image
Booboos171 in reply to

I am feeling much better thank you. Still have days when my shoulders ache but nothing like before pred.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Booboos171

As MsNails says you probably don’t notice too much of a difference at 15mg as it’s only approx double your physiological dose - maybe more energy than normal initially.

But if you have GCA and start on a much higher dose, like for example in my case 80mg, you most certainly do notice a difference - all that artificial cortisol surging around your body - hyper, hyper active. If you imagine young children on a sugar overload and multiply by 10 you get the picture. It does settle as your body gets accustomed to it, but it’s weird to start with.

As for coming off the steroids - that’s for the future- just concentrate on getting through the here and now. But as advised, once you get to that point slowly, slowly is the way to do it.

Booboos171 profile image
Booboos171 in reply to DorsetLady

Crikey 80mg! When the GP first prescribed 15mg, i thought that was high!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Booboos171

Yep, it sure was 😳! But necessary, unfortunately.

I found I was fatigued at times - seemingly for no apparent reason - during my taper from 6mg down to 3mg down in 0.5mg steps and using my slow taper. Eventually the adrenal glands kicked back in, but it can still take up to a year after finishing Pred for them to be working at 100%.

As I said earlier, just concentrate on now, what happens later down the line can be addressed then.

Take care.

Booboos171 profile image
Booboos171 in reply to DorsetLady

Thank you, you too!

Hellyowl profile image
Hellyowl

Hi. I got down to 3.5 for a synth test and Endo said my adrenals are coming back but slowly so I can continue to reduce and don't need any extra treatment as they should kick in eventually. I think it can be a slow process. I am tired in the mornings and then as the pred is absorbed I pick up through the day

Booboos171 profile image
Booboos171 in reply to Hellyowl

Thank you, i hope you start to feel less tired soon.

PMRpro profile image
PMRproAmbassador

It's a bit like having central heating AND a woodburning stove ;)

Your body is the central heating part, producing cortisol so your body can function, the pred dose is the stove in the room with the thermostat. As long as you are feeding the stove the temperature stays up and the boiler doesn't run because the room is warm enough. When the stove dies down and goes out the room cools and the central heating tops up the warmth. The body knows there is enough corticosteroid to function - it doesn't care if it is natural or in a pill - and that excess steroid is not good for it, so it doesn't add any more.

maria40 profile image
maria40 in reply to PMRpro

Love the analogy!

Booboos171 profile image
Booboos171 in reply to PMRpro

Thank you, great analogy 😁

bunnymom profile image
bunnymom in reply to PMRpro

As we move below 7 do the adrenals rise and fall similar to the PMR symptoms? I am at 6.5 and have brief spells of fatigue which I assume are adrenals. Also can feel very brittle emotionally, but it passes. So the adrenals advance in stages? It's not a once and done is it?

PMRpro profile image
PMRproAmbassador in reply to bunnymom

Possibly - it is a very complex set-up involving several organs, glands and substances. It has to get into balance and at the same time you are probably also reducing the pred dose and upsetting the balance again. I think of it as being a bit like those witches hat-shaped swings in a children's playground - you can get it swinging and circling nicely and then suddenly someone jumps off! And it has to settle down again...

bunnymom profile image
bunnymom in reply to PMRpro

Thanks. It still amazes me that Drs give us no info about reducing side effects and the adrenaline info. You'd think when they prescribe steroids all the time they might be more forth coming. Oh well, I've given up on that and the forum members are my support and go to.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to bunnymom

To be honest, most don’t know I think.

Took me about 9 months of intermittent and seemingly random episodes of fatigue to get mine working again. I kept reducing Pred but very slowly and hoped for the best! I never got bouts of nausea or other signs of adrenal insufficiency so I just jogged along in my own sweet way!

But it still took time after the end of Pred for all things to settle.

Hellyowl profile image
Hellyowl

Yes that is just it, I have always been a night owl so never been bright in the mornings which doesn't help

SheffieldJane profile image
SheffieldJane in reply to Hellyowl

I often feel as lively as a cricket when I get into bed at night having been definitely lack lustre in the daytime. Oddly I felt tons better on Australia time recently.

Hellyowl profile image
Hellyowl

Yes I think natural body clock is involved. If you don't like mornings and you are not energetic in the morning then I think slow adrenals are going to affect you more than someone who naturally loves the dawn chorus

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