hydrocortisone- microdose therapy

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by gnanny, Jul 2, 2004.

  1. gnanny

    gnanny New Member

    I have been searching this forum and another with a large base of fibro sufferers for input on the microdose therapy. I have read the positive response that one member here had. I think I would be able to decide better if I had read from others that it didnt work for. It leaves me to wonder....out of all the many many folks here only one person tried it OR lots of others did and it works so well they are out working and participating in life and too busy to come back and tell us? hmmmm....
    Any experiences from you?
  2. Forebearance

    Forebearance Member

    Hi, gnanny!

    I have CFIDS, not FM, so I'm not sure if this is relevant. But extremely small doses of hydrocortisone (Cortef) have been helpful to me. It increases my energy level.

    I take much less than 1 mg. But note that I am extremely sensitive to hormones.

    As with any adrenal hormone, if you develop increased acne or facial hair, it means you are taking too much.

    Best wishes,
    Forebearance
    [This Message was Edited on 07/02/2004]
  3. Wolverine

    Wolverine Member

    Anyone else know about hydrocortisone microdose therapy? Anyone else tried it at tiny doses?

    Fore: How much lower beyond 1mg did you or do you take? Ive only tried as low as 2mg and that gave me bad side effects but also HUGE benefit in energy and stamina / stability BP etc. I wonder what a tiny tiny dose like 100 MICROGRAMS a day would do?

    Thanks, Chris.
  4. Wolverine

    Wolverine Member

  5. rockyjs

    rockyjs Member

    Several years ago I tried very small doses of prednisone and even that was enough to make me bounce off the walls and get insomnia. Prednisone also makes me mean :)

    What I do now when I feel like I need some extra is rub a litle bit of 1% hydrocortisone cream on my skin. I vary the site every time. You absorb small amounts systemically and this approach doesn't seem to affect my sleep or emotional state. It does help me feel warmer and less achy (I usually use it in the winter when adrenals are most taxed because of the cold).

    I'm allergic to any petroleum based creams but I found a brand called Equate (which I think might be Safeway's generic) and have no problem.

    Jan
  6. Tigger57

    Tigger57 New Member

    There is a lot of talk about it in the thyroid groups. It's suppose to help with the adrenal glands. I think many of us probably have adrenal problems since we are under a lot of stress from pain and exhaustion and sometimes many medications. These are things that can easily deplete the adrenal glands.
    Hugs,
    Tigger
  7. Lolita9876

    Lolita9876 New Member

    is WalMart's brand...
  8. pastel

    pastel New Member

    Wolverine this may help you...I know how incredibly sensitive you are, but may be worth a try. See what you
    think.

    Obviously this post is for everyone too.

    Because my dhea levels are very low indicating adrenal
    exhaustion(surprise) my dr. suggest 25 mg. dhea daily.
    Har har. The first time I opened the capsule and took
    about half of it and felt energized but also irritable
    to an extent and my sleep was delayed significantly.

    Now what I'm doing and it is helping, is sprinkling out about what I guess to be 3 or 4 mg. of the pill and picking
    it up on a knife with some butter on it. Pop it on a
    cracker and into my yap.

    This would qualify as a microdose?? Sounds eensy for sure.

    The benefits are: some increased energy, lessened depressive
    thoughts and a more "alert" look about me.

    Have only been doing this for a couple of weeks and not upped the dose, and may not. A tip is to take it in the
    morning so it doesn't interefere with sleep.

    Best,

    Catherine
  9. suzbee

    suzbee New Member

    Hi, gnanny,

    I have been taking 5mg Cortef since January '04, and it has made an amazing difference. Much less pain, and more endurance. I've started believing life is worth living again. I hope you find what works for you. :)

    Hugs,
    suzbee
  10. gnanny

    gnanny New Member

    Thankyou all for your input. Now about the cortef, Is that by physician prescription only?
    I have had no luck with my primary care doc so I am researching other 'options'. After accepting the non-treatment approach I am getting Mad. I just cannot accept this downward spiral. Thanks for your time! stephanie
    [This Message was Edited on 07/14/2004]
  11. suzbee

    suzbee New Member

    Hi again, gnanny,

    Cortef is by prescription only, sorry to report.

    There are others on this board who take something similar called Drenatrophin. It is raw adrenal, along with a couple of vitamins or minerals that help it absorb correctly (or something like that). From what I understand, though, you have to get it from a health care practitioner of some kind. But it doesn't have to be an M.D. -- a well-informed chiropractor could probably get it for you.

    You might do a word search on Drenatrophin in the box at the top of the screen and see what the others are saying.

    Sorry you are having such a miserable time with your primary doctor! Don't you just want to reach out and wring their scrawny necks sometimes! (Oops, I didn't say that :)

    But you can get creative and bypass them, if you are careful.

    Hugs,
    suzbee
  12. Wolverine

    Wolverine Member

    Pastel: Thanks i might try that. i have broken dhea caps down before and i get liver pain from it even like 5mg. I think i would have to get dhea drops if poss, and take less than 1mg at a time.

    Suzee: Since you've been on cortisone, just how much better have you gotten? i have no life basically because i have NO endurance and only last a very little while down the shops or whatever. I have been fighting a constant inward battle to just go onto hydrocortisone or not permanently like you have. (Are you planning on getting off it sometime?)

    The thing is for me, i dont think i could ever get off it if i started it long term. When i even take it for 5 days i feel TERRIBLE when i stop - worse than ever before. I think to myself, if i go on it, ill be able to work our again and probably eat more & do more. Wouldn't this be better for my health than sitting and laying around everyday unable to do ANYTHING? Its a hard decision.
  13. suzbee

    suzbee New Member

    Hello, Wolverine,

    I'm answering this pretty late in the day and my mind is a little fuzzy ... bear with me. :)

    DHEA bothers me too, even specially packed just for me from a compounding pharmacy. I was so hoping it would help.

    On Cortef, along with all the other stuff I take, the difference is quite noticeable. There's no more constant crushing fatigue, and the pain level has gone down considerably. For example, since taking Cortef, I have been able to stretch a month's worth of pain medication over four months. To me, that's a miracle.

    Last week the doc was going to talk to me about starting a wean off the Cortef, but decided to give it 4 more months. I don't look forward to getting off, because of the stories I hear of relapse, or of feeling worse than before. Perhaps when the time comes, I'll be doing well enough to handle it.

    It might be helpful/comforting to read up on the difference between small doses of Cortef and the old standard treatment of Prednisone. You may find some commentary about it by Dr. Teitelbaum right here in immunesupport's library.

    In years past I have taken Prednisone a time or two for acute conditions, and while it eased pain and facilitated healing, I sure did not like what else it did. Cortef in such a small dose is very subtle and feels totally different than Prednisone. It doesn't make me feel "revved," hasn't seemed to affect my appetite any, and there's been no noticeable weight gain.

    Hope I didn't ramble too much, and hope this helps!
    Hugs,
    suzbee
  14. rdthewave

    rdthewave New Member

    I just finished reading Dr. Wilson's book.....ADrenal Fatigue............and from what I gather, if you decide to go with hydrocortisone, you are never to just stop it abruptly.....only taper off of it. And while you are tapering off of it he suggests to support the Adrenals with glandular products and herbs that support the adrenals.

    Overall he is more in favor of the route with glandulars,etc over the hydrocortisone.

    Things that help support the adrenals.

    Vit. C (most important)
    B-complex
    Siberian ginseng
    Maca
    Licorice
    Ashwaghanda
    Pantothenic acid (usually in b-complex....but not enough)
    Glandulars (there are many different ones out there)
    Vit E (mixed topherols) I know I spelled that wrong.

    I really never payed attention to Adrenal deficiency because I never thought the adrenals were that important.......I just thought they played a role in the fight or flight response. ANd while I do not think adrenal deficicency is the cause of CFS............I now think that it should be an important part of whatever program you are on.........at least for me.

    Just my two cents worth.

    Tammy


  15. Forebearance

    Forebearance Member

    Hi, Chris,

    Sorry I'm so late getting back to you. What I do is have my local compounding pharmacy make up capsules for me of 1/100th of a mg of hydrocortisone. Then I open the capsules and take a tiny speck.

    I do the same with DHEA. After much experimenting, I found that I feel better when I take both the DHEA and hydrocortisone. More energy, mainly.

    But I am hypersensitive to hormones, even without having CFIDS. I use my skin as a guide to finding the right dose. If I take too much, I will break out the next day.

    Yes, I agree that one should take them in the morning, like thyroid. It's when one's body is starting everything up.

    I just recently read about something called BellaFem Cortisol on the web. I want to try this, because it's supposed to be bioidentical. I wasn't even aware that the Cortef wasn't bioidentical. But maybe it would give me fewer side effects, so I could take more of it.

    So I've asked my local pharmacy if they can get it for me.

    It just takes trial and error to find the right dose for you. Don't give up, because it can really help!

    Forebearance


    P.S. In this day of mad cow disease, I personally would not take glandulars. The source of the glands in them is not regulated, and could possibly come from England.
  16. Wolverine

    Wolverine Member

    Thanks for your replys. Will reply more tommorrow im just VERY out of it now tonite!

    Forebearance: So you get capsules of 1/100th of a mg of HC, and 1/100th of a mg of DHEA, and THEN take only a tiny bit of that?? How can that do anything? thats extremely tiny! i would do that as i'd reckon that wouldnt shut the adrenals down. Do you have to get your Dr to prescribe it that way in that tiny dose? I didnt know they could even do them that low! Let me know what i have to ask my Dr and the compounding pharmacist to do it this way. Would try it.

    Thanks, Chris.

    P.S. What is a 'tiny speck' that you take? is it like, a tip of a teaspoon? or more like a few granules? -Chris.
    [This Message was Edited on 07/18/2004]
  17. Forebearance

    Forebearance Member

    Hi, Chris!

    Yes, I realize I take a very tiny amount of hormones. I also take about a millionth of a dose of HGH secretagogue. I hesitate to even tell anyone what I take, because people often have trouble believing me. Including doctors.

    But sensitivity to hormones is a spectrum, and somebody has to be on the end of the spectrum.

    Right now I have a good doctor who is happy to prescribe me 1/100 mg hydrocortisone capsules. She's never seen anyone like me before, but she believes me.

    In all likelihood, even if you are fairly sensitive to hormones, you could take the whole 1/100 mg capsule. Or even more. They could make you 1/10 mg capsules, too. You just have to experiment.

    Right. I agree that the idea is to supplement and support the glands, not shut them down.

    Most big cities have a compounding pharmacy. It will usually be an independent pharmacy, not a chain store. Or I bet there are some on the web.

    By tiny speck I mean the smallest possible speck I can pick up with my fingernail. I make no apologies for giving my body what it needs to feel better. It needs what it needs.

    Luckily hormones taste good, so opening the capsules is never a problem.

    Wishing you luck in your trial of this stuff!
    Forebearance
    [This Message was Edited on 07/18/2004]
  18. gnanny

    gnanny New Member

    I have enjoyed reading your input! I can always learn something new here.
    Thankyou
  19. Wolverine

    Wolverine Member

    Woooow one millionth?????? How in the HECK do they compound that dosage!! far out! :) thats amazing.

    I am also on "that end" of the spectrum unfortunately. BUT.. i have never tried such tiny doses!

    I thought i had tried 'very' small doses of hydrocortisone at 1/2 a mg and still got side effects so i thought there was no use. Also 2mg of DHEA and still side effects, so thought no use there either.

    I will definitely try these in these small doses. I will have to print this string of msgs and take to my dr because he would think i was a whack job if i came up and asked for 1/100th of a mg of HC. lol!

    I know quite a few compounding pharmacists here in sydney Aus, will just have to find out if they compound such a small dose.

    I would love to try secretagogue but i dont think its available over here.. not sure.

    Thanks heaps for the input! :)
    Chris.
  20. Forebearance

    Forebearance Member

    You're surely welcome, Chris!

    By the way, the HGH secretagogue is not a prescription drug. It's a product from the health food store that is mixed with water.

    So when I say I make myself a millionth of a dose, I am just guessing. I dilute it a lot with water and keep it in the freezer!

    My local compounding pharmacy can only make doses as small as 1/100 mg. Otherwise, I would have asked for a smaller dose.

    I guess you'll find out if you have a good doctor or not!

    Forebearance