Corticosteroids, prednisone, dexamethasone, etc...

[Eeyore]

BTW - cortisol is the same as hydrocortisone. -ol is just the suffix for an alcohol, and if you take an -one (a ketone) and add a hydrogen, you get hydrocortisone, which is just an alcohol, aka, cortisol.

If you take a lot of hydrocortisone/cortisol, prednisone, dexamethasone, or other corticosteroids, you will suppress the HPA - cortisol will become undetectable with enough of any of them (except obviously hydrocortisone, since it's the same thing as cortisol).

A healthy human adult generally makes on the order of 20-30mg of cortisol per day. Most of this is in the early morning hours shortly before we wake up. It has a strong circadian rhythm to it. Hydrocortisone is short acting, so often people with adrenal insufficiency take 15-20 mg first thing in the morning, then 5mg with lunch, and 5mg with dinner - this is sufficient for complete replacement of cortisol.

It's normal to feel somewhat better on short term corticosteroids. They tend to give you more energy in general. They stimulate gluconeogenesis, suppress inflammation, and reduce the amount of insulin produced (increasing blood sugar). Exercise also stimulates cortisol release as you need more sugar for your muscles to work.

You can drop more quickly on HC do around 20-30, after which a slower taper is needed if you have been suppressing the adrenals for a long time. If the therapy has been short term or pulsed, then tapering is often unnecessary.

Corticosteroids should generally be taken in the morning after the body has released its own cortisol. With HC, this leads to minimal HPA suppression since the HC is mostly gone by the time CRH/ACTH should start climbing to stimulate the adrenals to release cortisol.

If you've been on 20mg of HC for a long time, then yes, you should taper it. However, if the dosing was well timed, you may not have much HPA suppression - but you may have some degree of tachyphylaxis. This is a phenomenon whereby the body requires higher doses of steroids to achieve the same effect.

 

[Sidereal]

PS @cb2, forgot to say - interesting to hear the pred lifted your CFS symptoms. Although not all of us have had a good response, it seems a sizeable number of us do.

@Sidereal, maybe I'm not "atypical" on this - not a lot of people have tried good doses of pred, but from what I have seen on this thread and related ones, more have responded positively than not.

It might be good to get a poll going on this. Of course it would need to be about immunosuppressive doses of steroids, not replacement doses of hydrocortisone many here take for low cortisol.

 

[Woolie]

Interesting ?
I was recently on 50mg of pred for a viral infection and felt pretty good also. Was only on this dose for 2 days and than tapered off, 25mg for 2 days , 12.5mg for 2 days and 6mgs for one. Felt a little sluggish when i finished.

but makes me wonder if theres something to these high doses, may we actually need these higher doses? Our body is suppose to increase it own cortisol levels in times of stress and i wonder if our bodies just cant do it any more.

I thought i would have sleep problems with high dose of pred but i slept well. Even though testing we may have adequate levels, during times of stress we don't have the ability to make enough cortisol???

I'm thinking there's proobably nothing wrong with our own production. But there is definitely something wrong with our immune system. Can't remember where I read it, but corticosteroids reduce your production of a whole host of cytokines that are known to play havoc with us. Will see if I can dig up the info I found.

Wow, 50mg is a monster dose for a viral infection! Did you sleep at all?

 

[heapsreal]

I'm thinking there's proobably nothing wrong with our own production. But there is definitely something wrong with our immune system. Can't remember where I read it, but corticosteroids reduce your production of a whole host of cytokines that are known to play havoc with us. Will see if I can dig up the info I found.

Wow, 50mg is a monster dose for a viral infection! Did you sleep at all?

Im a monster so 50mg might not be that big lol. Viral infection was post head shingles that was causing high bp. I was put on meds for bp as well which i have remained on for now.

suprisingly i did sleep ok but maybe because it was reducing alot of inflammation i had going on.

your probably right about cytokines and inflammation etc. Its probably an indication if one feels better on it that its because of its anti inflammatory effects . I guess pred works like a sledge hammer on the immune system, good to have something that works on inflammation effectively in us that's more refined??

 

[Eeyore]

Corticosteroids (specifically glucocorticoid aspects thereof) do have major immunomodulatory effects - obviously - and there is good reason to believe they might be effective on some level in ME. Whether or not that means they are a useful treatment is unclear - there are risk/benefit calculations to be considered, and the mechanism requires further elucidation - but generally most people with ME report benefits - far more than those who do not.

Steroids do ultimately affect IL2 which is essential for all lymphocyte proliferation. They have many effects though on many aspects of the immune system, and in general reduce the inflammatory aspect of the immune system.

In some diseases, cortisol or other steroids are given to help the body handle the stress of infection or even surgery - a supplemental dose of cortisol (1 time) is generally a good idea when one is having dental surgery of any severity. For major surgery or infection, some increase in cortisol is normal in generally healthy people, and in addison's patients, supplemental cortisol is prescribed by most physicians for these situations. It prevents the body from causing damage from too much inflammation, and can be prescribed to help with recovery from surgery (but too much impairs wound healing - it's a delicate balance).

 

[cb2]

BTW - cortisol is the same as hydrocortisone. -ol is just the suffix for an alcohol, and if you take an -one (a ketone) and add a hydrogen, you get hydrocortisone, which is just an alcohol, aka, cortisol.

If you take a lot of hydrocortisone/cortisol, prednisone, dexamethasone, or other corticosteroids, you will suppress the HPA - cortisol will become undetectable with enough of any of them (except obviously hydrocortisone, since it's the same thing as cortisol).

A healthy human adult generally makes on the order of 20-30mg of cortisol per day. Most of this is in the early morning hours shortly before we wake up. It has a strong circadian rhythm to it. Hydrocortisone is short acting, so often people with adrenal insufficiency take 15-20 mg first thing in the morning, then 5mg with lunch, and 5mg with dinner - this is sufficient for complete replacement of cortisol.

It's normal to feel somewhat better on short term corticosteroids. They tend to give you more energy in general. They stimulate gluconeogenesis, suppress inflammation, and reduce the amount of insulin produced (increasing blood sugar). Exercise also stimulates cortisol release as you need more sugar for your muscles to work.

You can drop more quickly on HC do around 20-30, after which a slower taper is needed if you have been suppressing the adrenals for a long time. If the therapy has been short term or pulsed, then tapering is often unnecessary.

Corticosteroids should generally be taken in the morning after the body has released its own cortisol. With HC, this leads to minimal HPA suppression since the HC is mostly gone by the time CRH/ACTH should start climbing to stimulate the adrenals to release cortisol.

If you've been on 20mg of HC for a long time, then yes, you should taper it. However, if the dosing was well timed, you may not have much HPA suppression - but you may have some degree of tachyphylaxis. This is a phenomenon whereby the body requires higher doses of steroids to achieve the same effect.

Eeyore- actually i was talking about the predinose at 20mg for the rash- i dont plan to come off the HC at this point, yet i would like to find out if i am taking enough HC or too much. i guess that isn't realy easy to sort out.?

 

[Eeyore]

20mg of prednisone is far in excess of what any human being would need for basal cortisol production, and you run no risk of addisonian crisis (unless through some sort of tachyphylaxis mechanism) at that dose. A typical human being will produce about 20-30mg of HC per day. This is the equivalent of approximately 5-7.5mg of prednisone in terms of glucocorticoid potency. 20 is significantly in excess.

Humans are fairly predictable in their basal cortisol needs. You can measure 24h urinary cortisol to see how much you are making and you can use that range to determine if you are in the "normal" range - keeping in mind that prednisone will screw up the test results by suppressing the HPA. You can also look at whether the body is trying to increase or decrease cortisol production - primarily by looking at ACTH (adrenocorticotropic hormone) and CRH (corticotropin releasing hormone). These are produced and secreted by the pituitary (ACTH) and the hypothalamus (CRH). These are suppressed in people who are taking high doses of corticosteroids, and they are increased in people with primary adrenal insufficiency - but in people with 2ndary (pituitary) adrenal insufficiency, they are reduced even though cortisol is too low. In this case, the adrenals can make cortisol, but they aren't told to do so by the pituitary. This is less common than primary adrenal insufficiency though - so ACTH is usually measured.

 

[cb2]

lets see ..i do have a 24 hour urine test from last spring, the endo said it was "too high" but that was before the second shoulder surgery- since the second surgery my energy has been horrible and that was almost a year ago-- the good news is i have good shoulder health now! recently i had an am cortisol test it came out at 5.9 ( 4.0 - 22.0 ) I did not take any HC the morning of the test. I have an old ACTH test but not sure that would be worth digging up? is it possible to tell from the am cortisol test? thanks

 

[Eeyore]

5.9 is lowish for am cortisol, but if you are normally taking HC and didn't take it that day, then you may have some degree of HPA suppression, so it's not clear if you are naturally low or if it is iatrogenic. You'd need to be off HC for some time to see how much your body produces on its own.

The elevated 24h urinary cortisol interpretation depends on whether you are taking HC or not. If you are, then it's measuring not just what you produce, but also what you ingest. I can't tell from your post if you were taking HC at the time.

Generally, you should increase your dose of HC for surgeries if you have adrenal insufficiency. The body needs more cortisol to control inflammation in that scenario - although the supplementation is short term. Generally I've heard of doubling normal cortisol levels for minor surgery (like tooth extraction) and tripling for major surgery, although there are no hard and fast rules, and you need to talk to your doctor about this. People with adrenal insufficiency also generally take some cortisol with any illness causing a fever.

The body will naturally produce more cortisol to handle stress, but if you have dysfunction of the adrenals, then you may not be able to do this, and so supplementation is required, but is not entirely static and must account for physiological stress.

 

[cb2]

Thank you for the info Eeyore. I did increase my doses following surgery. Prior to taking HC i had very low DHEA and would get sick with lung infections alot and that HC has helped with that- as far as testing to see if I need it and coming off the HC i am not sure i could do that.. doesn't it take a long time to taper? i do have some old saliva tests from before the HC in which i was low. at this point i am thinking of increasing up to 30mg a day to see if it helps at all.

 

[Eeyore]

I guess you need to figure out what question you are trying to find the answer to...

e.g.
Are you naturally adrenal insufficient w/o supplementation? If so, why? Is it primary or secondary?
Would more HC help you feel better?
Do you have "too much" HC in your body, and by what standard is it too much? Above normal range, sufficient to increase risks or side effects, etc.?
Are you currently suppressing your adrenals?

Depending on what you want to know the answer to, the test is different. I'm not quite sure which question you want to know the answer to.

PS. Not everyone who takes HC or other corticosteroids and derives benefit therefrom actually has adrenal insufficiency. For example, patients with SLE (lupus) often take prednisone - FAR in excess of what would be normal. They are not taking it for adrenal insufficiency, but they do derive therapeutic benefit (although at those doses they also have higher chances of side effects). Sometimes it's a risk/benefit ratio calculation.

 

[cb2]

I seemed to have passed the STIM test i had prior to HC so that would rule out "primary" correct? and i believe my endo said secondary- I think the question i would like to figure out is .. how much HC do i need really?

 

[Eeyore]

If your adrenals respond normally to pituitary (or exogenous) stimulation, then you do not have primary adrenal insufficiency. It sounds like your endo is convinced you do have some adrenal insufficiency (i.e. he/she is not trying to use supraphysiologic doses of HC, just trying to replace what is missing).

The amount you need depends on a lot of things. You may still have some residual pituitary function stimulating the adrenals, but when you supplement with HC or other corticosteroids, you suppress that - so it's like trying to hit a moving target. Depending on your age, gender, and weight you can figure out approximately how much HC you need for normal day to day life (i.e. not physiologic stress) - there are formulas for this, but really the general approach is to start out with a bit, test, see what 24h cortisol looks like (am cortisol is far less reliable in people with 2ndary AI on supplemental HC). You aren't trying to hit an exact number though - you have to base it both on symptoms and test results, as well as clinical signs, side effects, and risk factors for other side effects associated with too much or too little HC.

Basically, it's a lot of trial and error. They will go a lot off symptoms, but if the 24h cortisol starts to get too high, they might tell you to take less because too much HC can cause side effects too. If your pituitary isn't functioning, then ACTH is not of much use in dosing HC, and you don't get the am cortisol spike either because that's caused by the pituitary stimulating the adrenals to release HC. So basically, you only have the 24h test and signs/symptoms.

 

[cb2]

thank you Eeyore.. i can ask my endo for another one- i was on HC when i started with her- i had been seeing a dr at the holtrof clinic and they gave that as a "trial experiment" if i remember right. that was a very long time ago.

last year we did a 24hour urine and the endo said the results were "high" but that was before the second surgery. would be good to find out where things are now. thanks for the great information!