Cortisol and corticoids - a question

Did you ever take therapeutic corticoids / cortisol?

  • No; never.

    Votes: 13 30.2%
  • I did, and it made me feel far less fatigued.

    Votes: 9 20.9%
  • I did, and it has helped somewhat.

    Votes: 7 16.3%
  • I did, but it didn't do much of anything.

    Votes: 2 4.7%
  • I did, but I had a worsening of symptoms with cortisol.

    Votes: 12 27.9%

  • Total voters
    43

SOC

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Hmmmm.... I'm not sure how to answer the poll. I've been given predisone, a corticosteroid, a number of times for very brief periods in the past 20-some years. Every time I felt much better and wished, in a way, I could stay on it. I know that's not an option. But I wouldn't say my good response is that "it made me feel far less fatigued". It relieved all kinds of symptoms. I felt normal for a week or so. It was so lovely to feel normal -- not sick and tired and woozy and hyper-sensitive to odors, and so on and so on... Sigh....

Years later my endo did the standard cortisol testing and decreed I don't have a problem. I'm not sure his interpretation was anything but the most conservative, "You ain't gonna die so go away" one, but apparently I don't have a major issue that would justify cortisol treatment.
 
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SOC

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@SOC - helped somewhat, probably. It didn't take away your fatigue, but it helped in other ways?

-J
Okay, "It helped somewhat" it is. :)

No, it certainly didn't take away the lack of energy, utter exhaustion, or PEM... if that's what we're calling fatigue. ;) It was more like I didn't feel constantly sick and dragging tail. I was also hyper-sensitive in those days -- having dizziness/nausea/OI-type episodes with exposure to all kinds of things -- perfumes, cleaning agents, common vasodilators (other people's cough drops, Vick's VapoRub, eucalyptus), even some trees. The prednisone relieved those symptoms significantly, if only for the brief duration of the treatment. That was a relief. It was like having a brief vacation from being sick.

Bottom line: It gave me temporary relief from feeling constantly sick and allergic, but didn't change my energy level.
 

minkeygirl

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Hormones are beyond the grasp of my brain. I have estrogen dominance issues and zero libido so no hormones doesn't help.

I've been using OTC progesterone which didn't seem to help But I took some DIM this morning and i feel like I can breath a little easier.
 
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I passed out/ had OI issues when I took a full dose of Prednisone the first time. Low blood sugar or something, maybe.


I thought I was taking hydrocortisone as that is what I asked the doctor for, sigh. If I knew, I would have taken a lower dose and eased into it. I didn't really want to take it after that.
 

Hanna

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I took 1/4 of 5mg prednisone this week (1.25 mg), two days in a row and experimented serious worsening of my POTS and severe agitation + insomnia. 4 days later, I am still struggling with it. So I quit the prednisone just after this two days attempt to raise somewhat my cortisol level (from a saliva test, I am low normal at 8.00 then really low until evening).
 

minkeygirl

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@JaimeS I just reread your post. Re:
Problems in the store, I'm guessing you have ruled out MCS to something in there?

I couldn't walk into certain stores without having problems. Pesticides in grocery stores did me in. Soaps and detergents. Cleaning products in doctors offices.

One way to counteract MCS is alka seltzer plus or baking soda in water. I would take some with me and drink it while I was there.

Looking for low dose Vitex. And I wanted to cut back on the amount of pills taking. Oh well.
 

Ema

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I took 1/4 of 5mg prednisone this week (1.25 mg), two days in a row and experimented serious worsening of my POTS and severe agitation + insomnia. 4 days later, I am still struggling with it. So I quit the prednisone just after this two days attempt to raise somewhat my cortisol level (from a saliva test, I am low normal at 8.00 then really low until evening).
Prednisone makes me want to stick my head in the gas oven immediately.

Medrol is OK...until about day 3.

But HC and dexamethasone don't have any negative effects on my mood.

But some people do fine with pred/Medrol. It's really a matter of trial and error for everyone to find the "right" dose and form of steroid that will alleviate symptoms without causing new problems.

Worsening of OI is probably from a decrease in aldosterone production which is why many people also need Florinef when they are on steroid replacement.
 

JaimeS

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Low blood sugar or something
...or something, @Snow Leopard. I'm going to have to look at the whole aldosterone imbalance theory. :)

I took 1/4 of 5mg prednisone this week (1.25 mg), two days in a row and experimented serious worsening of my POTS and severe agitation + insomnia. 4 days later, I am still struggling with it.
I'm so sorry you felt geared up, @Hanna - I hope it wears off soon. I would say I experienced severe worsening of my POTS, but can't call my reaction 'agitated'. I just wanted to lie down.

One way to counteract MCS is alka seltzer plus or baking soda in water. I would take some with me and drink it while I was there.
@minkeygirl - also the way to counteract (respiratory?) acidosis, which is the reaction to getting too little oxygen. That's what I take for a breathing episode. It'd probably help in those cases, too. I'm exploring this now as we head into summer, when my breathing problems are worst.

I find the cleaning aisle in the grocery extremely unpleasant and hold my breath when I walk past, but put me in a Lowes for five consecutive minutes and I'm turning blue.

@Ema - I'm not sure everyone should be replacing steroids. Even when I take liquorice or other herbs with phytocorticoids, it lays me flat in precisely the same way (though nothing seems as fast or as hard as 10mg hydrocortisone already powdered up and super-bioavailable!). Not something I'm going to repeat until I find the 'right one'. :)

-J
 

JaimeS

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@minkeygirl - Low dose Vitex (less than half a dose)

Since it's a powder, you can divide it up easily as well.

Vitex takes awhile to come into its full effect, especially if you're doing low-but-slow. If it doesn't bother you in any way, take it for at least a month before deciding if it's helpful.

-J
 

minkeygirl

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@JaimeS I'm going to hold off on the
Vitex for now. I'll talk to my NP about it. I'm starting too many other things and don't need to add to the confusion.

A huge part of my breathing is infection because I had a lot of relief with roxi.

Mine has nothing to do with seasons. It's there, the same all the time.
 

Hanna

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Prednisone makes me want to stick my head in the gas oven immediately.

Medrol is OK...until about day 3.

But HC and dexamethasone don't have any negative effects on my mood.

But some people do fine with pred/Medrol. It's really a matter of trial and error for everyone to find the "right" dose and form of steroid that will alleviate symptoms without causing new problems.

Worsening of OI is probably from a decrease in aldosterone production which is why many people also need Florinef when they are on steroid replacement.
@Ema, I have problems to understand how the whole thing works and how to find the right way to support adrenals. Perhaps another symptom may indicate indeed that taking steroids leads aldosterone production deficiency ?
After taking the steroids, I pee the whole night long, can't retain any fluids though I try to compensate with some additionnal sea salt.
 

Hanna

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@JaimeS , the agitated feeling is weird : it is "right in my head", it doesn't induce any burst of energy/movements. The agitation is in the brain itself, and goes along with extreme exhaustion and I have to lie down too, can't remain standing at all, feeling pressure into chest and legs can't support my body anymore.

I tried some 5 mg hydrocortisone too a few years ago with bad reaction too. So I am not sure also that the steroid way is indicated for me. So far, herbal adaptogens didn't bring any improvement (and some were also hard to take).
Could adrenal glandular be worth to try ?
I have only questions... and no answer at all.
 

JaimeS

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I'm going to hold off on the
Vitex for now. I'll talk to my NP about it. I'm starting too many other things and don't need to add to the confusion.

A huge part of my breathing is infection because I had a lot of relief with roxi.

Mine has nothing to do with seasons. It's there, the same all the time.
Absolutely, @minkeygirl - don't start too many things at once. Impossible to know what's helping, harming, having no effect at all. :)

Re: why the breathing episode is coming on, none of what we're talking about is mutually exclusive. If it's respiratory acidosis (or lactic acidosis or metabolic acidosis), then that could be because of an infection. See the poll here, and subsequent posts. Some infectious organisms produce lactic and other acids as byproduct as they live their little lives (or die off).

Being worse during a certain season doesn't support the absence of an infectious organism, either. There are infectious organisms that tend to reproduce / become worse at the time of year of the initial insult, e.g. malaria. I had a professor who caught malaria in the springtime, and every early spring suffered through a bout of it (albeit far less awful than the initial insult).

My 'initial insult' was in the dog days of summer, and this is when I feel sickest, every year. I can have breathing episodes at any time, but they started happening in the summer and still seem more likely in the summer.

Finally, oxygen is simply less available in the hot, wet summer air. The more moisture the air holds, the less room there is for oxygen molecules in the same volume. The same goes for right before a storm: the barometric pressure drops, meaning the partial pressure of oxygen also drops. This doesn't rule out infection. :)

-J
 
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JaimeS

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the agitated feeling is weird : it is "right in my head", it doesn't induce any burst of energy/movements. The agitation is in the brain itself, and goes along with extreme exhaustion
I get that with serotinergic compounds. Racing and weirdly circular thoughts, agitation, but I'm wiped out and can barely move. Corticoids don't have that excitatory edge for me, but I think I understand what you mean, now. :)

-J
 

ukxmrv

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I respond well to hydrocortisone but it only lasts for a few days and PEM sets in.

I feel more alert, stronger initially with less of the morning symptoms I think are due to low cortisol (shaking, fainting, nausea etc). No agitation or racing heart etc.

Prednisone is good for a week or more depending on the dose. Then the PEM strikes big time (severe viral attack with weakness)

Dexamthosone for some reason makes me feel weaker straight away and poisoned.
 

Ema

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@Ema, I have problems to understand how the whole thing works and how to find the right way to support adrenals. Perhaps another symptom may indicate indeed that taking steroids leads aldosterone production deficiency ?
After taking the steroids, I pee the whole night long, can't retain any fluids though I try to compensate with some additionnal sea salt.
Yes. Excessive nighttime urination is also a sign of low aldosterone.
 

JaimeS

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@ukxmrv - whoa. It's interesting that you get a bit of time before the PEM sets in. I had that same reaction to Rhodiola rosea - increased energy for a day or two before a monumental crash that made me sorry I'd even tried it.

Our bodies are telling us to be still, and sometimes it feels like my body's punishing me when I try to find a workaround! :(

I assume you voted the last one, then. *sigh*

-J
 

ukxmrv

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I didn't vote because I am confused by the reactions and how long they last at different doses before I crash badly.