Are you still on it? If you had a post-use phase then obviously he knew to not let you stay on it. I can't believe Teitelbaum would have any patients taking this stuff for more than a short period. This is the doctor who writes books titled "From Fatigued to Fantastic!". Yeah, it's just so easy, isn't it doc. I put him under the "in it for the money" CFS specialist.
low dose hydrocortisone without impairing immune response
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Are you still on it? If you had a post-use phase then obviously he knew to not let you stay on it. I can't believe Teitelbaum would have any patients taking this stuff for more than a short period. This is the doctor who writes books titled "From Fatigued to Fantastic!". Yeah, it's just so easy, isn't it doc. I put him under the "in it for the money" CFS specialist.
maddietod
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Well, this was in the early 90s. After about 2 years, I got scared of being on it. Doctors universally said it was completely safe at that dose, long term, but I was worried. I took myself off it, and now I'm talking with my (new) doctor about going back on.
Heapsreal,
You posted a link to a PDF, purporting ot show the benefits of long-term steroid replacement for sub-clinical purposes. I read the link you posted.
The only study I could find, in your PDF, was the one by Cleare, 1999. Yes, this guy's a quack, but that doesn't support your contention that long-term steroid replacement is a great idea, does it.
If you have any more studies backing up your claims that "long-term steroid replacement" for CFS patients is a good idea: then please post them.
Yes, this is my point exactly. Has there ever been a clinical study showing that long term steroid replacement is a good idea for CFS? At this point no. There has been plenty of evidence showing harm being caused by taking too much HC or taking it for sub-clinical purposes.
I've never heard of Cleare, until being directed to a PDF by someone, supposedly showing HC's effectiveness in CFS. It was never my intention to show psychobabble as treatment for CFS. But his study is the only one I've seen so far about HC and CFS. IF you can direct me to any other positive outcomes, I would be delighted.
Cleare A, Heap E, Malhi G, Wessely S, O’Keane, V, Miell J. Low dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial. Lancet 1999;353:455-458 involves 1 month of low dose hydrocortisone in CFS.
Regarding harm, studies involving low dose hydrocortisone for any disease would be relevant. There's no point in demanding it be a CFS study, except to show that it is effective (which short term studies do).
Regarding harm, studies involving low dose hydrocortisone for any disease would be relevant. There's no point in demanding it be a CFS study, except to show that it is effective (which short term studies do).
Dreambirdie
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I totally agree with you. As I posted before, HC screwed me up BADLY, crashed my adrenals, and sent me into my current 4 year relapse. Taking it was one of the WORST and BIGGEST mistakes I ever made.
maddietod
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I haven't read any of the studies, and I'm not going to because my brain can't process that kind of information any more. But why this insistence on clinical studies? I was able to function completely normally for over 2 years taking 7.5mg of cortef daily. It turns out I suffered no damage from this (my liver is in great shape). I don't trust doctors, I got scared, I got off it, and I've been worse ever since.
There are a ton of threads here where we share personal experiences about what works for us, and it's usually OK to just toss ideas around. I'm confused by the intensity here and the demand for studies. Anyway, what is "long term?" What is "too much HC?"
If somebody has information that 7.5mg of cortef taken for X years causes Y damage (or doesn't), I'd really like to hear that, because I'm seriously considering going back on it. It's the only thing that has ever helped me.
Yes, Dreambirdie, taking a hydro-cortisone, unless there is clearly a replacement issue, is not a good idea. These are powerful and potentially dangerous drugs. The ME-afflicted body clearly has slowed adrenal function for a reason-- the body is not that stupid. I am so glad you recovered. Your experience sounds like an absolute horrow show.
Madie,
If you are not able to absorb some of the info out there about the potential side effects of cortisol replacement; I would highly advise not jumping in until such time as you can do so.
Long term means: longer than one month. I would like to talk to an ME patient who has been on them for two years. Get a real testimonial on long term usage.
Please ignore the "intensity" of my disagreement, especially if you have found a doc who will start giving you this again. You forever free to take whateve drug you wish.
heapsreal
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Madie thats basically what im chasing, to find out what doses are helpful with out supression and for how long? The things i keep reading are saying 10-15mg a day, these seems to include doctors and patients. Not everyone but it seems that those using above the 20mg a day seem to be the ones having some type of issue.
heapsreal
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dreambirdie, what sort of doses did u use and for how long?
Can you tell us your prior cortisol tests etc?
When u say crashed your adrenals do u mean adrenal supression?
How was this treated, did they slowly taper u off HC or just left u without tapering off ?
cheers!!
Dreambirdie
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I already posted as much as I remember about doses and tests on the first page of this thread.
As for getting off the HC, I had to manage this completely on my own, due to the ignorance of the idiot doctor, who was one of the HOLTORF MEDICAL GROUP doctors. He actually insisted that HC could not cause the blazing anxiety which it absolutely DID cause, but "could possibly cause psychosis." (his words) He came to that conclusion after flipping through a book on HC side effects. After that, I was done with him.
Initially I tried tapering off slowly, but every dose I took made me feel so dreadful that I finally went off cold turkey. The anxiety, insomnia, and heart palpitations cont. for 6 weeks after that. And I am talking FULL BORE CONSTANT freaking hellish anxiety. I took lots of magnesium (to bowel tolerance), and holy basil every hour for those 6 weeks, and had to lay in bed and do yoga breathing exercises several times/day or the anxiety got worse. Once the anxiety cooled down, I was CRASHED and trashed.
At this point, four years after the fact, I am not yet where I was before the HC.
In conclusion....I have to say, that it still stresses me out to think about my HC hell, and to write about it, so I won't be doing this any more. I truly and deeply regret that I ever took HC, and would never ever ever take it again.
Ema
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Testing and treating my adrenal insufficiency with hydrocortisone and dexamethasone was one of the best decisions I ever made in terms of getting better and more functional. I will take it either until I die (most likely if autoimmune destruction is responsible) or until I get signs of overreplacement (possible if caused by HPA axis dysfunction) and then I will wean off or stop the steroids. Suggesting that someone with adrenal insufficiency (and many with ME/CFS do have adrenal insufficiency) should not be on low-dose steroid replacement is akin to suggesting they kill themselves. It's totally irresponsible.
Further, we should WANT to get the people with undiagnosed or subclinical endocrine issues OUT of our cohort so that some appropriate research can be done on the true population (not to say that one can't have both endocrine disorders AND ME/CFS). Besides the fact that those people could go back to the world of the living instead of suffering forever...needlessly. I'm so tired of people with subclinical endocrine disorders being treated with antidepressants, benzos, and pain killers and told they have CFS/fibromyalgia/etc. It's no good for anyone (except possibly the drug makers). Where has our common sense gone?
It's ridiculous to think that taking a physiological dose of a bioidentical substance could cause a body so much grief. We release 100s of mgs of cortisol on a daily basis when under stress or illness. Our bodies do this automatically and without hesitation to keep us alive. We need cortisol for survival - period. I don't doubt that not treating low levels appropriately for years would cause severe issues and would likely cause a downward progression in terms of functionality.
The problems come when the stresses and infections are unrelenting and the cortisol levels are too high for long periods of time. But none of that is likely at low-doses and to pretend otherwise is simply fearmongering. I am glad that there are good doctors out there that aren't playing into this and are helping me and others to have a better quality of life. I wish the same outcome for everyone.
Ema
Further, we should WANT to get the people with undiagnosed or subclinical endocrine issues OUT of our cohort so that some appropriate research can be done on the true population (not to say that one can't have both endocrine disorders AND ME/CFS). Besides the fact that those people could go back to the world of the living instead of suffering forever...needlessly. I'm so tired of people with subclinical endocrine disorders being treated with antidepressants, benzos, and pain killers and told they have CFS/fibromyalgia/etc. It's no good for anyone (except possibly the drug makers). Where has our common sense gone?
It's ridiculous to think that taking a physiological dose of a bioidentical substance could cause a body so much grief. We release 100s of mgs of cortisol on a daily basis when under stress or illness. Our bodies do this automatically and without hesitation to keep us alive. We need cortisol for survival - period. I don't doubt that not treating low levels appropriately for years would cause severe issues and would likely cause a downward progression in terms of functionality.
The problems come when the stresses and infections are unrelenting and the cortisol levels are too high for long periods of time. But none of that is likely at low-doses and to pretend otherwise is simply fearmongering. I am glad that there are good doctors out there that aren't playing into this and are helping me and others to have a better quality of life. I wish the same outcome for everyone.
Ema
Giving low-dose replacement therapy is quite common by "anti-aging" type doctors around the country. Doing so is irresponsible. This is not like taking DHEA, Licorice or some other supplement. Most other people will have the same reaction that you had. There is a usually a "honeymoon" phase, where the patient feels great !! Better than ever. Fatigue, inflammation, other symptoms diminish. Then the usual sag, then the horrendous crash of the adrenal system. This is a dead end treatment, and a dead end subject. The end.
Wayne
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Hi Ema, thanks for all your posts on this thread. -- When I first encountered the topic of low-dose HC, I did an inordinate amount of research on it before proceeding (probably over 100 hrs total). And when I did get started on it, I proceeded VERY cautiously. After my first dose of 5 mg, I immediately knew it was more than my body could handle, and reduced my next dose in half. I VERY gradually upped my dosage from there, watching for any warning signs along the way. I eventually arrived at an optimal supplemental dose of 20 mg/day, more during times of extra stress.
Obviously, I was aware of the possible downside of this type of therapy, having read many cautions regarding its use. But the dramatic increase in my quality of life left me feeling that I could live with those risks. One thought I remember having (about 14 years ago), was that if I could enjoy this increase in functionality for at least five years, I could die at the end of the time period and be confident that those five years of benefits (feeling vastly better) would outweigh my perhaps living another 30 years in the same dreadful state of health/functionality my life had been mired in.
I just want to mention that the brand name supplementation I take is called Cortef. I tried at least three other kinds of HC, and found that with each one, my body did not respond favorably at all. And I don't believe I ever went beyond my first dose with these. Regarding this experience, I think it's entirely possible that somebody could do quite well on one particular brand of HC, but could do miserably on another brand their body is not attuned to. -- I am so thankful I didn't start out with one of those other brands, or my last 14 years would likely have left me with a functionality rating of 1 or so, instead of the 3 or so I now have.
Put another way, just prior to supplementing with Cortef, I put my functionality rating at about 4%. During this time, I would often go to bed at night and seriously wonder whether I would even wake up in the morning (sometimes hoping I wouldn't). Upon starting the HC, my functionality level literally doubled in the first two weeks, and I was eventually able to build on that to where I am today (average 20-25%). In short, this long-term experiment with low-dose HC worked very well for me, and I continue to be grateful for having found it.
Wayne
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I guess one more thing to note: I often wondered over the years whether I should continue with the HC, wondering if the risks were in some way increasing along the way. I even tried to taper down on more than one occasion. Each time, after tapering down to about 15 mg/day over a several week period, I would notice my overall functionality being reduced at the same time. As I would increase back to 20 mg, my functionality was restored.
Just part of my improved functionality included: Better overall energy, better digestion, better skin tone, better sleep, better stress response, and more. It's really not a difficult decision for me to continue with this therapy.
Just part of my improved functionality included: Better overall energy, better digestion, better skin tone, better sleep, better stress response, and more. It's really not a difficult decision for me to continue with this therapy.
Hi all,
I just wanted to weigh in and say that I went on HC (cortef) four years ago and have been stuck on it (between 20-25 mg) ever since. I cannot lower the dose or go off of it or else I get extremely weak and my heart rate goes way up. I believe it has dampened my adrenal function and my globulin levels are low on blood tests, for whatever that is worth. I had tested low cortisol on urine and low in the morning on saliva tests. Looking back, I wish I had not gone on them. I felt awful on them at low doses at first, but the doc said to keep taking it and raising the dose, as the Jeffries book dictated. I'm still not sure what to do about this issue.
I just wanted to weigh in and say that I went on HC (cortef) four years ago and have been stuck on it (between 20-25 mg) ever since. I cannot lower the dose or go off of it or else I get extremely weak and my heart rate goes way up. I believe it has dampened my adrenal function and my globulin levels are low on blood tests, for whatever that is worth. I had tested low cortisol on urine and low in the morning on saliva tests. Looking back, I wish I had not gone on them. I felt awful on them at low doses at first, but the doc said to keep taking it and raising the dose, as the Jeffries book dictated. I'm still not sure what to do about this issue.
Hi Wayne,
You know me...I'm sincerely happy that the Cortef has helped you increase your functionality, and improve all those symptoms.
But having said that, doesn't the fact that when you (and others) have tried to cut back on the dosage only to regress, contradict Jeffrie's theory/hypothesis that one only needs to take it for 2-3 years to allow the adrenals to 'rest', then taper down and be okay without the HC?
I also thought I read somewhere that Jeffries himself stayed on the Cortef for the rest of his life.
???
Dan
heapsreal
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i have read that some people have been able tocome off where others have to stay on it to maintain their gains, i suppose for them its like any form of hormone replacement therapy where the dysfunction is always there for some, it appears wayne hasnt had any long term side effects?? i suppose there are different levels of dysfunction, some will restart with treat and some wont restart the adrenals??
heapsreal
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I would trust a doctor with experience in anti aging as this is like their main tools that they understand well. There are people who have improved with HC and many have pm'd me saying so but dont want to get brought into this thread u have taken apart, you seem to be good at destroying threads, you totally ignore the responses of the people who have improved on HC and stopped others posting on this topic because u try to bully them off with lines like, but u feel free to take as many chemicals into your body as u want. I think the way u carry yourself towards others is shocking, you are potenially scaring the life out of someone from trying a treatment that could be very beneficial to them and increase their functionality. You have no personal experience using HC only your ego that we know of at this stage. Which i think many people can see, so take what u say as a grain of salt as this is a common occurrence on any treatment that seems helpful. I am glad others with poor experience have also shared this, itt would be nice to know dosages and length of treatment etc to know why these horror stories occurred. It does seem to be a treatment either helps of makes one feel sick, but at the moment there arent too many negative stories related to low dose hc 10-15mg a day.
I was reading Sarah Myhill will prescribe cfs/me patients with doses between 5-10mg if adrenal dysfunction is present. It just makes sense to use something like this for low cortisol levels to help improve energy, reduce inflammation, increase immune function, tolerate stress better, its cheap, if used correctly no side effects or minimal and have regular blood work to monitor this. Otherwise lets all curl up in the corner in the fetal position and die. Im not advicing people to get on this treatment but is a consideration if one has low adrenal dysfunction to talk over with a doc who understand this, probably an antiaging or intergrative doc. There are people who have been helped by it greatly and those that dont, but my understanding is the non responders are alot lower. Even a short course on HC in low dosage is worth a trial run, even for a week or 2 which would have little side effects.
Thats my opinion but sure i havent heard the last of it.