Still unclear about cortisol suppression

[Donna5658]

 I wonder if people could clarify this for me. Do our adrenals shut down completely on prednisone or do they adjust depending on our dose of prednisone? I have assumed that as I have lowered my prednisone dose, my cortisol production is slowly creeping back up. Am I wrong?

[SnazzyD]

You’re right, they shut down usually above 10mg and usually after about 3 weeks, simply because there is enough of the artificial cortisol (Pred) sloshing about. Yes, as you drop under 10mg your adrenal glands should start to make up the shortfall. For some it is seamless but for some it takes a lot longer for the body to notice and/or respond to the lack of Pred and make its own cortisol. This is when we have to keep being a bit low and stick out the tiredness that comes with it while we wait patiently. For a few it never recovers or recovers insufficiently and they have to top it up with hydrocortisone.

[DorsetLady PMRGCAuk volunteer]

Have a read of this link - hopefully explains simply -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

They don't shut down completely ever - they just stop producing cortisol when you are on a dose of pred above about 10mg for more than a few weeks. They carry on producing the other substances they are responsible for, It is a bit like your central heating boiler with thermostat and a wood burning stove - the central heating doesn't feed the radiators when the wood burning stove is on full blast but it still produces hot water, As the woodburning stove burns down. the heat in the room also falls but there is often an over-swing before the central heating starts up and a delay before the radiators warm up. In the same way, you may have to get well below the often quoted 7mg pred before the body recognises that the corticosteroid level is low enough for them to do something. And sometimes the response is very sticky and unreliable for months. Even 2mg pred is thought to be enough in some people for the adrenal function to not get going but the problems arise when you are faced with a (relative) emergency when a spike is needed to deal with it.

[Swdai in reply to PMRpro]

brilliant way to explain it 👏👏

[piglette]

I think of it rather like food. The steroids come along and feed your adrenals so they don’t have to look for food anywhere else and they can just lie back and do nothing. The steroids then start to give the adrenals less food and so the steroids start to feel hungry and so have to go out and look for food which is tiresome for them and they may gripe about it, until they are on their own and the free food stops totally. It is probably not a very good description, it is just how I think of it!

[Gossiplady in reply to piglette]

hi piglette! What a marvellous description! Exactly!

[9lives in reply to piglette]

I really like the description , I can visualise it too. The adrenals with a grumpy 😡 face xx

[perceptual63 in reply to piglette]

"... and they may gripe about it, ..." 😂

[ab58sf]

Donna, my rheumatologist indicated that below 10 mgs I should not experience any adrenal insufficiency. I have not that I am aware of. I am currently on 3-31/2 mgs daily and I never exceeded 10 mgs. However, I am very tired and sleepy the last few days. That may be beacuse my brother , who had dementia, just passed away and I am fatigued from helping him and the funeral, etc. Since I was diagnosed with PMR, I weekly ran his errands with him, got his meds, and took him to doctor appointments, which I was glad to do. It did run me down though. I attribute my current tiredness to that. Hope my doctor was correct.

[Donna5658 in reply to ab58sf]

Thanks for the reply. I’m very sorry about your brother. It sounds like you supported him throughout his ordeal. Caregiving can take a huge toll on people, both physically and emotionally.

My understanding is that the lower you go when tapering on prednisone, the more likely it is that you will (possibly) have adrenal insufficiency. This is because the adrenal glands can be slow to “wake up” after being suppressed by the initial higher doses of prednisone. Not everyone will experience adrenal insufficiency, but in some people it can take 6 months to a year for them to fully recover. (SnazzyD wrote a great explanation of this in her reply above.) It sounds like you just have to rest more and wait out the fatigue as for most people the cortisol production eventually kicks back in. If you are down to 3mg and are reasonably okay, it sounds like your body us responding well.

[PMRpro Ambassador in reply to ab58sf]

But that is EXACTLY when it is likely to happen - ABOVE 10mg you are taking enough pred to compensate for the lack of cortisol, 10mg is enough when taken over a longer period to suppress adrenal function and make it unreliable so even if you have never been above 10mg, you could be subject to it.

So sorry to hear about your brother - but that upset and reaction to it and all the things to be done will be loads to make you fatigued, both physically and adrenally.

[DorsetLady PMRGCAuk volunteer in reply to ab58sf]

As PMRpro says doctor is not correct -maybe have a look at this -explains about adrenals…

healthunlocked.com/pmrgcauk...

And agree with all that’s been going on (condolences on loss of your brother) you may well be struggling on PMR and adrenal front.

Best wishes

[ab58sf in reply to DorsetLady]

Thank you DorsetLady! Very helpful. Why don't our doctors clarify all this with us??

[PMRpro Ambassador in reply to ab58sf]

Probably because they don't know!!!