probably over thinking but interested: Hello Trying... - PMRGCAuk

PMRGCAuk

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probably over thinking but interested

galp profile image
galp
11 Replies

Hello

Trying to figure out my hitting the wall at around 3 o'clock everyday.

Since taking my 30 mg ( after60-40 going to 20 on Friday) at 2:00 am and going back to sleep, for the last few days , I find that my mornings are more even. No crazy highs,/ fatigue Mind still mush,

If pred is out if your system in 14 to 24 hrs, That would makes sense I guess.Almost to the hr.

If 7 mg is estimated to be what our adrenals put out in normal situations, Does this mean basically our adrenals stop producing from the higher dosages over time, so we go thru an mini adrenal shutdown every day if the steroid may be gone in 14 or so hours.?

On a lighter note, any thoughts for a no carb, no salt , high proein diet, snack I can put by my bed for that 2am. Really trying to stay away from fruit, though coukd prob use the potassium...

Thanks Friends,

Gina

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galp profile image
galp
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11 Replies
HeronNS profile image
HeronNS

Not a daily mini shutdown. The adrenal glands stop producing cortisol within a very few weeks, in fact I think if you are on steroids for as little as two weeks you already have to taper, not stop cold turkey. So if you have been taking more than about 8 mg pred for several weeks you are unlikely to be producing any cortisol. This is why we go through a period of extra fatigue as we lower our dose as it takes a while for the adrenals to realize they have to start working again. I have also heard that it takes up to a year after ceasing steroids altogether for the whole system to be back to normal. This is a very good explanation about tapering steroids, applicable to PMR/GCA patients as well as others who have been on long term steroid therapy:

cssassociation.org/patient-...

And I hear that people like yoghurt by the bed - many because they take their pred then!

galp profile image
galp in reply to HeronNS

Thank you That helped! Will read article as well. and yogurt great idea

galp profile image
galp in reply to HeronNS

Great article, thanks

karools16 profile image
karools16 in reply to HeronNS

HeronNS. That's an excellent read. Thank you for the article.It IS a very good explanation, on tapering.

SheffieldJane profile image
SheffieldJane

Thank you for the very useful article Heron. It came at the right time for me even if quite a lot was revision. Interesting about Cod Liver oil - the vile stuff my mother gave me and it's chasing me again!

Jackoh profile image
Jackoh

Thought this article very good Heron. Thank you for sharing it.

PMRpro profile image
PMRproAmbassador

Snack - full-fat, plain, unflavoured Total Greek yoghurt, tastes like cream so needs no flavouring, comes in a sealed portion-size tub and will live fine that long without a fridge!

Don't quite follow your reasoning - though I have probably misunderstood what you are saying. Pred is not entirely out of your body, especially at those high doses but once you reduce the dose yes, it falls dramatically. The half life is about 2 to 4 hours. So every few hours the level halves: 60/30/15 and so on. But the important time is in the early morning - a study showed that taking 5mg at night suppressed the adrenal function more than taking 15mg at 9am. Most cortisol is produced in the morning to ready the body for the day and then a small amount is produced later. Plus there are spikes in response to need if we are subjected to stresses.

Once you are on high doses of pred the suppression happens very quickly - within a few weeks. At lower doses it takes a bit longer. And it lasts all day - it isn't a mini-shutdown daily, it is pretty much sustained because of the pattern of the entire complex feedback system that leads to it being produced. Several organs/glands and hormones are involved.

The hitting the wall thing is probably because you are not pacing yourself. The pred only suppresses the inflammation - it doesn't do anything to the actual disease, an underlying autoimmune disorder that makes your immune system unable to recognise your body as self and so it attacks various tissues, causing damage and inflammation and that is what makes you feel as if you have flu. That continues in the background despite the pred - and while at high doses the pred may make you feel like Duracell Energiser Bunny as you reduce the dose that effect goes. You are left with the fatigue of autoimmune disease. And that can hit like a brick wall when you don't pace yourself - which is the only way to cope with this sort of fatigue.

You may find this helpful:

healthunlocked.com/pmrgcauk...

and this

healthunlocked.com/pmrgcauk...

galp profile image
galp

thank you. and believe me even I am unclear to me most of these days

but its clearer now.

getting yoghurt today,

be well

Gina

Amkoffee profile image
Amkoffee

Most people I've talked to eat yogurt though I'm not sure how long it would last at your bedside table at night.

galp profile image
galp in reply to Amkoffee

Good day

Thanks, i am not a yogurt fan, esp warm, but i know its a good low carb choice for the calcium and coat the stomach a bit, so i sat the small bown in a larger bowl of ice. Worked oerfectly.

Odd? though, I am finding sleeping at night, after the intial crash evening sleep. , getting harder as I am decreasing dosage...

Nothing about this makes sense to me...

Gina

Asbeck profile image
Asbeck

Re: Snack by bed: I have tried coconut oil. Apparently you don't have to brush your teeth after taking it. At room temperature (even in a hot climate) it's kind of thick. Sometimes I take a tablespoon to coat my stomach and then put the pills in the 2nd tablespoon of the coconut oil, take it, and follow with water. Again thanks to PMRpro. I did not know that a "wee hours of the morning" dose of Pred is not the best idea for waking up the adrenal gland. Sometimes, however, it's great to allay lying in bed for hours with "discomfort."

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