Hydrocortisone question

[taniaaust1]

I think this is the article you are referring to but I don't see where it talks about the benefit of supplementing HC not being worth the risk?

http://jcem.endojournals.org/content/93/3/703.full

But it is still early for me...

Ema

No that isnt the study. The one Ive been refering to is apparently a 1998 study done by the NIH examining low dose hydrocortisone for the treatment of CFS. Its mentioned in the following article.
http://www.webmd.com/chronic-fatigue-syndrome/news/20080321/steroid-for-chronic-fatigue-syndrome

(link corrected) quote from that link above

"Hydrocortisone Beneftis and Risks. He cites a 1998 study from the National Institutes of Health examining low-dose hydrocortisone for treatment of chronic fatigue syndrome.
Although the treatment was shown to be have some benefit, a significant number of patients also exhibited a common side effect seen with higher steriod doses - adrenal suppression, a reduction in the amount of hormones made by the adrenal glands.

The researchers concluded that "the degree of adrenal suppression precludes {the steriod's] practical use of CFS"

 

[taniaaust1]

Is this another example of a study set up to skew results?

25mg of cortisol is actually a rather high dose unless you DO have Addison's or something close to it. Of course those studies showed suppression! Natural production is around 30mg daily, give or take.

An Addison's dosage would be around 30-40 mg daily, split out, and completely suppressing any remaining production. 25mg daily with a still-functioning adrenal gland is very dangerous and could suppress it with bad results. In most cases that I have heard of, 5-10mg per day is the best, just enough to stimulate the glands and support them while healing, but not enough to suppress them. Some days, a dosage of 15-20mg would be indicated with high-stress situations, all depending on the doctor's instructions and close monitoring.

I myself dont view a 25mg dose as actually low and hence when I was taking cortisol for my deficiency, I was only taking 10-15mg per day (half of that dose in morning and half at night I think it was). But some and some CFS specialists... are considering a 25mg dose to be low.

And what that study did apparently show that we tend to get "a significant number" of us.. adrenal suppression usually seen in those taking higher amounts of it.
................

i just found the actual study being refered too in that other article.

"Oral hydrocortisone, 13 mg/m2 of body surface area every morning and 3 mg/m2 every afternoon, or placebo, for approximately 12 weeks.". http://www.ncbi.nlm.nih.gov/pubmed/9757853
from this one

Although adverse symptoms reported by patients taking hydrocortisone were mild, suppression of adrenal glucocorticoid responsiveness was documented in 12 patients who received it vs none in the placebo group

So in 12 with CFS out of the 70 in the study..after only 12 weeks, it was causing their adrenal glands to be working worst not better. (Adrenal suppression has the risk of leading to Addisons Disease which is life threatening).

hence why its sooo important for anyone wanting to trial this.. to only be doing so under a doctor. The study shows it DOES make many of us feel better but the risks and what is doing to our adrenals was outweighing that and for that reason it wasnt being recommended.
....

For the amount "13 mg/m2 of body surface area every morning and 3 mg/m2 " say in a 65 kg person.. how much all up in a day would that make it which was being taken?

 

[heapsreal]

Thanks to all of you on this thread! I have learned a lot, hearing about your experiences.

One other caveat to follow: DHEA supplementation can be hazardous for women, better results for men. Women are better off using pregnenalone, a DHEA forerunner, and letting the body produce its own DHEA.

Could probably have 2 chapters one for men and one for women, both probably require different adjustments.

 

[xks201]

The Addison's dose is completely individualized...I take an equivalent to around 50mg of HC of dexamethasone every day.

 

[Rand56]

Hi Rand,

i think your idea sounds good. if functioning ok on HC then yes add small amounts of dhea, maybe get the 10mg capsules, empty them out and divide the powder into 1/4 and recap them, so now u have 2.5mg doses of dhea. Then u can start on them and maybe stay at that dose until u feel comfortable for a couple of weeks then increase again by 2.5mg increments etc etc. when u get to ten mg then retest your dhea levels. you want to atleast aim for dhea levels in the middle of the range,

I think you have to juggle things around alot and use things in different orders until u find the right fit, this is sort of what i did. Maybe once u have a good dhea level you then maybe taper off HC and slowly add the pregnenolone again. but this is just an idea.

The rash and itchiness just might be because your cortisol is low??? U might find once u have improved adrenal function to a certain degree u can then handle other things u havent been able to handle in the past. eg sudfed PE generally has very weak stimulant qualities but when i used it for sinus problems it would destroy my sleep, but now that i have got my dhea sorted for some reason i now dont have this problem, it seems to help me handle being overstimulated and this happened with pregenolone where i am now using much larger doses which had i used in the past would have blown my head off. i know your situation is different but maybe HC might do the same for you. its really trial and error.

the link i sent you on HC helpful for you??

cheers!!!

Hi Heaps

Yes, thanks for the link, good info on there. Do you take regular DHEA or 7-Keto? When I start the HC I'm not going to add in the DHEA right away. Don't want to confuse myself not knowing what kind of reaction is coming from what. From what I have read in Jefferies book, it can take up to 2 weeks for it to have any effect. I'm assuming too on the DHEA, since I'd be starting out with a small dose, it would have to come from caps first. The idea from xks does intrigue me about doing the cream, but I would think it would be hard to ballpark measure out small amounts from the cream.

 

[Ema]

No that isnt the study. The one Ive been refering to is apparently a 1998 study done by the NIH examining low dose hydrocortisone for the treatment of CFS. Its mentioned in the following article.
http://www.webmd.com/chronic-fatigue-syndrome/news/20080321/steroid-for-chronic-fatigue-syndrome

(link corrected) quote from that link above

"Hydrocortisone Beneftis and Risks. He cites a 1998 study from the National Institutes of Health examining low-dose hydrocortisone for treatment of chronic fatigue syndrome.
Although the treatment was shown to be have some benefit, a significant number of patients also exhibited a common side effect seen with higher steriod doses - adrenal suppression, a reduction in the amount of hormones made by the adrenal glands.

The researchers concluded that "the degree of adrenal suppression precludes {the steriod's] practical use of CFS"

Thanks for posting the link. Unfortunately that article from 1998 is another example of poorly done science in my opinion.

Most importantly, this statement:

Although the treatment was shown to be have some benefit, a significant number of patients also exhibited a common side effect seen with higher steriod doses - adrenal suppression, a reduction in the amount of hormones made by the adrenal glands.

So yes, steroid treatment helped some people, but because of the perfectly normal adrenal suppression due to the feedback mechanism, those people should not be helped and should not use this beneficial therapy.

WHAT??? Do they say that to MS or lupus patients that may also have some degree of likely reversible adrenal suppression when taking (much larger) steroid doses? What evidence in the study supports the view that some degree of adrenal suppression is not a worthwhile benefit to gain the increases in wellness?

The people in the study had adrenal suppression at the end of the study as is perfectly normal after a 12 week course of steroids and were then dropped without tapering at the end unless showing frank adrenal suppression. Those people were tapered off of the steroids as they all should have been in the first place. WTF were they thinking with no steroid taper?? Regardless, they all seem to have come back to "normal" adrenal function; at least the article does not fear-monger about permanent suppression in this population.

The full text of the article states the dosing like this:

They were instructed to take placebo or hydrocortisone pills, equivalent to about 16 mg/m2 of body surface area per day, 20 to 30 mg every morning at about 8 AM, and 5 mg every day at about 2 PM, for 12 weeks. This dosage was designed to approximate normal daily cortisol levels and their diurnal variation.

Normal cortisol levels do not function like this. 20-30 mg in the morning is an enormous dose all at once and would promote all the negative side effects that are associated with steroid use including negative changes to blood sugar. If they had truly dosed 25-35 mg in a physiological manner, I believe they would have reported even greater changes to overall well being. This would be no more than 10-15 mg in one dose ending with a bedtime dose to promote sleep and hormonal secretion (thyroid and growth hormone particularly) overnight.
Also, looking at one hormone in isolation is never the best idea. What changes might they have seen if they had paired reasonable HC dosing with optimal thyroid levels? I bet the results would have been even better - and then disregarded, of course, because those patients probably had "normal" TSH levels.
All in all, this study is equivocal at best and an argument for the exact opposite conclusions could easily be made if one wanted based on exactly the same data. This is the problem with most all studies in this area.
And isn't Reeves the exact fellow that was being demonized in another thread last week for his contributions to CFS? Why are we trusting his interpretation of this study?

 

[Rand56]

hi Heaps

You had said in a previous post.....

"pregnenolone can increase all hormones and it will be different in everyone but it does lean more towards making cortisol"

If it leans more towards cortisol, and I am not doubting you, you know more about this than I do, would it not make sense then for anybody taking pregnenalone <which I have done in the past but won't be doing now because I'm going to trial HC> to also divide the dose up and take it 4 different times of the day like it is suggested one does taking HC? Is this what you do...take it a number of times a day? I just noticed the instructions on an old bottle of pregnenalone I have laying around that it says just take 1 or 2 tabs daily. If it does lean more towards cortisol, wouldn't one assume to get a better effect from it taking it 4 times a day? Whenever I took it in the past, I just followed instructions on the label.

Question about DHEA. At some point when I add this in....do I just take this in one dose at night because afterall isn't DHEA and cortisol antagonistic to each other?

 

[Sallysblooms]

naturopaths and intergrative doctors are the people to see to get adrenal saliva testing done. normal docs just dont believe in this stuff.

This all works best with a great integrative MD. Testing and the right doses of cortisol, pregnenalone etc is key. The cortisol testing I take twice a year and pregnenolone and other hormones are all tested once or twice a year. I take Preg. to make more cortisol in the morning. I also take cortisol. Good doctors will know how to do it.

 

[Ema]

This all works best with a great integrative MD. Testing and the right doses of cortisol, pregnenalone etc is key. The cortisol testing I take twice a year and pregnenolone and other hormones are all tested once or twice a year. I take Preg. to make more cortisol in the morning. I also take cortisol. Good doctors will know how to do it.

Yet the uneducated doctors will be quick to point to this study (not having really read or understood it) to deny an ME/CFS patient a trial of HC...and this study used, you guessed it! SALIVA testing. But it's not really valid in the REAL endocrinology world. So why was it used here - presumably because they know that it is the most accurate way to measure free cortisol. Go figure.

 

[Sallysblooms]

Yes, the more people that find good integrative MD's the better. MD's can go to learn more at Dr. Weil's school and other places I am sure. It takes A LOT of study, travel, meetings, etc, but it is really the only way to actually heal and help a patient.

 

[heapsreal]

hi Heaps

You had said in a previous post.....

"pregnenolone can increase all hormones and it will be different in everyone but it does lean more towards making cortisol"

If it leans more towards cortisol, and I am not doubting you, you know more about this than I do, would it not make sense then for anybody taking pregnenalone <which I have done in the past but won't be doing now because I'm going to trial HC> to also divide the dose up and take it 4 different times of the day like it is suggested one does taking HC? Is this what you do...take it a number of times a day? I just noticed the instructions on an old bottle of pregnenalone I have laying around that it says just take 1 or 2 tabs daily. If it does lean more towards cortisol, wouldn't one assume to get a better effect from it taking it 4 times a day? Whenever I took it in the past, I just followed instructions on the label.

Question about DHEA. At some point when I add this in....do I just take this in one dose at night because afterall isn't DHEA and cortisol antagonistic to each other?

firstly i use regular dhea. but i am going to start using a transdermal cream, creams are absorbed into the fatty tissue and slowly released. I use a pregnenolone cream as well now and this is why u dont have to dose several times a day as its slowly released from the fatty tissue throughout the day. plus preg is just made available for your adrenals to make what cortisol it thinks it needs.
I take my dhea in the morning. I dont think it lowers cortisol but helps counter balance its effects, so not really antagonisting as such, so u want a high levels dhea at same time as cortisol. its worth experiementing with transdermal creams for slow release, although i think pregnenolone is more important in creams then dhea.
I got no effect at all from pregnenolone tabletsbut dhea tabs and creams seem to work.

cheers!!!

 

[Rand56]

hi Heaps

Ok when I decide it's time to add in the DHEA I'll get the regular and do it in the morning and start off slow like you suggested to me. Thanks a bunch!

Rand

 

[rlc]

Hi Tania, RE this study http://www.ncbi.nlm.nih.gov/pubmed/9757853?systemMessage=Wiley+Online+Library+will+be+disrupted+on+25+August+from+13%3A00-15%3A00+BST+%2808%3A00-10%3A00+EDT%29+for+essential+maintenance

As pointed out in this article by Dr Baschetti they used far to higher dose of hydrocortisone and it could only have lead to adrenal suppression!! See http://jama.jamanetwork.com/article.aspx?articleid=1030131 Levels of hydrocortisone above 5-10 mg will cause adrenal suppression in patients who don’t have Addison’s. They used about 20-30 mg in the morning and 5mg at 2 pm, as they say “This dosage was designed to approximate normal daily cortisol levels and their diurnal variation.” I.E the amount that healthy people normally produce in a day! This is a dosage that can only cause adrenal suppression, recommended dosages for Addison’s are between 15-30mg in divided doses see http://www.cks.nhs.uk/addisons_disease/management/scenario_addisons_disease/intercurrent_illness_adjustment_of_steroid_dose#-450193 so there was nothing low dose about the dosage it was at a level that is needed for total adrenal failure (Addison’s), ME patients don’t have total adrenal failure so these levels of hydrocortisone will only cause adrenal suppression.

Everyones favorite psychiatrists Simon Wessely and Anthony Clare proved way back in 1999 that hydrocortisone at doses between 5-10mg was an effective treatment for CFS and did not cause adrenal suppression see http://www.ncbi.nlm.nih.gov/pubmed/9989716?dopt=Abstract

Dr Baschetti writes more about the use of low dose Hydrocortisone and florinef here http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2796.2000.00695.x/full

More interesting articles by Dr Baschetti on the similarity of CFS to Addison’s can be found by doing a google scholar search on R Baschetti.

Dr Baschetti claims to have cured his own CFS by using Licorice which was used to treat Addison’s before hydrocortisone and florinef was invented, dissolved in milk http://www.newtreatments.org/fromweb/licoriceconversation.txt

There is a lot more about Cortisol levels and ME here http://www.hormoneandlongevitycenter.com/cfidsfibromyalgia/

Unfortunately people have used the results of the studies using to higher doses of hydrocortisone which can only cause adrenal suppression to say that it can’t be used as a treatment and ignored the evidence that it is an effective treatment if the dose is kept low.

Also the tests for cortisol are largely useless for testing for partial adrenal insufficiency; adrenal insufficiency is defined as having lost 90% of cortisol production. And most doctors act as if there is no such thing as partial adrenal insufficiency even though it is in the text books. The morning cortisol test is useless, because it is only failed if you have total adrenal failure and are just about dead, or have too much cortisol and have Cushing disease, anything in-between is considered normal by doctors, but you can still have a normal result and have Addison’s, the ACTH stimulation tests uses a massive amount of ACTH and will produce normal results if the patient doesn’t have full adrenal failure, there is a low dose ACTH stimulation tests which is a lot more sensitive but most endo’s don’t use it, and they are still arguing about how to interpret the results.

So it looks like by a combination of Wessely ignoring his own findings and choosing to push GET and CBT instead of hydrocortisone, everyone ignoring the fact that the amount of Hydrocortisone used in the Mckenzie study wasn’t low dose and was bound to cause adrenal suppression, the lack of sensitivity of cortisol testing, plus no doubt the usual not ruling out all other diseases in cohorts chosen for testing. That this potentially very effective treatment for ME has been largely ignored.

Anyone reading this who is thinking about trying hydrocortisone, florinef or licorice please only do so under medical supervision they are very powerful and potentially dangerous medications!! If you have a different medical condition as well you could get very serious side effects.

All the best

 

[GracieJ]

Wow GracieJ, I'm so pleased to hear about your success story. Even though it sounds like it's still somewhat "relative", it sounds very profound as well (and inspirational!). Congratulations on having all your hard work pay off so well!

Hey, Wayne, thanks!! Sure appreciate it. Thought I'd answered this, but apparently not... or I hit the delete button or something equally silly.

 

[Hanna]

Sorry to bump into the thread... but I need some help with hydrocortisone/prednisone :
Yesterday, I've just returned from a 3 days hospital stay because of a bad allergic reaction from insect bite. Because of serious MCS they couldn't do anything else than giving me huge doses of hydrocortisone (7 infusions of 100 mg in 60 hours) and told me to continue at home with oral prednisone (50 mg 3 additionnal days).
That's my first day at home now and I feel weird symptoms : anxiety, tightness and dryness in throat, difficulty to swallow etc (no need to precise that I am also exhausted)... that I am pretty sure are linked to having stopped the HC and replaced it by the prednisone.
I have low cortisol background (salive test, tested oct.2011) which I haven't treated yet.
After hospitalization I havn't taken 50mg prednisone but 20 mg (50 mg was way too much even according to Hubby who is a MD and know how I react to it). And I intend to continue two additionnal days at the same dose.
But I don't feel safe to simply cut the prednisone in two days, and wonder if I should add some HC (I have got some 5 mg caplets) to avoid a major crisis. I really don't have any clue and would appreciate some insights from people who have been dealing with the problem.
Thank you very much in advance!

 

[adreno]

So it looks like by a combination of Wessely ignoring his own findings and choosing to push GET and CBT instead of hydrocortisone, everyone ignoring the fact that the amount of Hydrocortisone used in the Mckenzie study wasn’t low dose and was bound to cause adrenal suppression, the lack of sensitivity of cortisol testing, plus no doubt the usual not ruling out all other diseases in cohorts chosen for testing. That this potentially very effective treatment for ME has been largely ignored.

There are a few out there that recommend HC therapy for ME/CFS, but the general consensus is against it.

There have been three randomized controlled trials testing the hypothesis that hydrocortisone might be effective in the treatments of CFS. In the first study, 70 patients were randomized to receive either active (13 mg/m2 of body surface area at 8 a.m. and 3 mg/m2 at 2 p.m.) or placebo treatment for 3 months [81]. There was a moderate but significant benefit of hydrocortisone on a global health scale, but not on other more specific measures of fatigue or disability. A second study used much lower doses of hydrocortisone (5–10 mg daily) [82]. Thirty-two subjects entered a placebo-controlled crossover trial, with 28 days on each treatment. There was a clinically significant fall in self-reported fatigue scores in 34% of the patients on active treatment, compared to 13% on placebo. However, Blockmans et al. [83] found no differences be- tween treatment with a combination therapy (hydrocortisone 5 mg/day and 9--fludrocortisone 50 g/day) and placebo in a 6-month randomized double-blind crossover study in 100 CFS patients. Taken together, hydrocortisone replacement therapy cannot be recommended for clinical use because of the limited benefit, because of the loss of efficacy upon discontinuation [82] and because of the adrenal suppression when using higher doses [81].

http://content.karger.com/produktedb/produkte.asp?DOI=000104468&typ=pdf

 

[xks201]

Either labs say you need it or you don't. Either your ACTH stim test and cortisol pattern are sufficient or they aren't. Both are probably needed because maybe you are secondarily insufficient and so just an AM cortisol may not reveal that.

 

[Ema]

There are a few out there that recommend HC therapy for ME/CFS, but the general consensus is against it.


http://content.karger.com/produktedb/produkte.asp?DOI=000104468&typ=pdf

This study is very much like the original one posted in this thread that has already been significantly discounted due to the methods and interpretation.

The cutting edge doctors who have not been brainwashed by fear are incorporating treatment of the nonfunctioning HPA axis into their treatments of ME/CFS because they know it makes their patients feel better while working on underlying symptoms such as the methylation block or infections. It's one part of a treatment plan that may not be right for everyone but deserves thoughtful consideration and appropriate testing.

"Moderate but significant global health benefit" from taking HC would really be a good first step for many people with ME/CFS and HPA axis dysfunction and temporary adrenal suppression is perfectly normal while taking steroids and generally not a long-term risk for anyone. "A significant fall in fatigue" would also sound pretty good to many with ME/CFS.

5 mg of HC per day would only help those with the mildest of HPA axis dysfunction - so this is not applicable to our population at all in my opinion. No doctor would agree that adrenal suppression would occur at this dose. It's less than most people would put on a bug bite if using hydrocortisone cream which is widely available over the counter and considered very safe.

Further, fludrocortisone is used to replace aldosterone and not all people with HPA axis dysregulation will have an issue with aldosterone. It must be tested like all other hormones.

 

[taniaaust1]

Thanks for posting the link. Unfortunately that article from 1998 is another example of poorly done science in my opinion.

Most importantly, this statement:



So yes, steroid treatment helped some people, but because of the perfectly normal adrenal suppression due to the feedback mechanism, those people should not be helped and should not use this beneficial therapy.

WHAT??? Do they say that to MS or lupus patients that may also have some degree of likely reversible adrenal suppression when taking (much larger) steroid doses? What evidence in the study supports the view that some degree of adrenal suppression is not a worthwhile benefit to gain the increases in wellness?

The people in the study had adrenal suppression at the end of the study as is perfectly normal after a 12 week course of steroids and were then dropped without tapering at the end unless showing frank adrenal suppression. Those people were tapered off of the steroids as they all should have been in the first place. WTF were they thinking with no steroid taper?? Regardless, they all seem to have come back to "normal" adrenal function; at least the article does not fear-monger about permanent suppression in this population.

The full text of the article states the dosing like this:



Normal cortisol levels do not function like this. 20-30 mg in the morning is an enormous dose all at once

Wow thanks for bringing to my attention what the full text article says.. yeah 20-30mg..tha's huge.. it really makes one wonder how they could call this study a low dose study and get away with that.

We need a medical study watchdog to make studies do corrections if they are being quite deceptive.

 

[ukxmrv]

Hanna, I hope that you are OK. Didn't reply to your email as no experience with large doses of HC and then Prednione.

Hope that someone else will respond with sensible advice.

My thoughts are with you and hoping all is well by now.