Doctor Says He's Had Success With Hydrocortisone for CFS and Fibr

Discussion in 'Fibromyalgia Main Forum' started by tonakay, Mar 27, 2008.

  1. tonakay

    tonakay New Member

    I read this on Webmd today.... interesting.

    Doctor Says He's Had Success With Hydrocortisone for CFS and Fibromyalgia Patients
    By Salynn Boyles
    WebMD Medical NewsReviewed by Louise Chang, MDMarch 21, 2008 -- Boosting levels of the stress hormone cortisol with low doses of hydrocortisone could help patients with chronic fatigue syndrome and fibromyalgia feel better, a California doctor says.

    Kent Holtorf, MD, says the simple treatment carries significantly less risk and greater potential for benefit than widely accepted treatments for the two conditions. But chronic fatigue syndrome (CFS) and fibromyalgia experts who spoke to WebMD were not so sure.

    Holtorf believes the majority of CFS and fibromyalgia patients have low levels of the steroid hormone cortisol due to dysfunction in a brain system that regulates response to stress, known as the hypothalamic-pituitary-adrenal (HPA) axis.

    The problem is that very sophisticated testing is needed to identify this dysfunction.

    As a result, while a number of studies have shown lower-than-normal cortisol levels to be common in CFS and fibromyalgia patients, many others have failed to show the association.

    "The overwhelming majority of these patients have [cortisol] dysfunction, whether testing shows this or not," he tells WebMD. His review of the research is published in the latest issue of the Journal of Chronic Fatigue Syndrome.

    Low-Dose Treatment
    Holtorf routinely treats patients with chronic fatigue syndrome and fibromyalgia with low doses (5 to 15 milligrams a day) of the steroid hydrocortisone, in addition to other treatments, to boost cortisol levels.

    Of 500 consecutive patients treated with the steroid at his Torrance, Calif., clinic, Holtorf says 94% showed some improvement and 62% showed substantial improvement by the fourth visit.

    William C. Reeves, MD, director of the chronic viral diseases branch of the CDC, believes that most patients with CFS and fibromyalgia could benefit from taking low-dose hydrocortisone, but he says the treatment is not without risks.

    Reeves and CDC colleagues recently published a study showing that women with CFS symptoms tend to have lower-than-normal cortisol levels upon waking in the morning -- a time when levels typically spike.

    "It does appear that there is something different in HPA axis function in these patients, but that doesn't necessarily mean that this treatment is the answer," Reeves says.

    Hydrocortisone Benefits and Risks
    He cites a 1998 study from the National Institutes of Health examining low-dose hydrocortisone for the treatment of chronic fatigue syndrome.

    Although the treatment was shown to have some benefit, a significant number of patients also exhibited a common side effect seen with higher steroid 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 steroid's] practical use for CFS."

    "This idea of using low-dose steroids has been around for a long time, but it may not be as simple as simply raising cortisol levels. And even if it does help, it is not without risks," Reeves says.

    Fibromyalgia researcher Lesley Arnold, MD, agrees.

    "The evidence in favor of using steroids to treat these conditions just isn't there," the University of Cincinnati associate professor of psychiatry tells WebMD. "We just don't have enough consistent data about abnormalities in the HPA axis."

    Arnold points out that some studies in fibromyalgia patients have shown the HPA axis activity to be increased and some have shown it to be decreased. "The only thing that has been consistent is that there is usually some kind of abnormality in function."
  2. Waynesrhythm

    Waynesrhythm Member

    Hi Tonakay,

    Regarding the following from your above post:

    [[ Hydrocortisone Benefits and Risks

    He cites a 1998 study from the National Institutes of Health examining low-dose hydrocortisone for the treatment of chronic fatigue syndrome.

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

    I actually recall this study, and what they don't mention in this article is the amount of hydrocortisone they used in their study. What I remember is that it was approximately 40-60 mg/day, well above the amounts most often used by William Jeffries, M.D.

    I've posted fairly extensively on my own low-dose Cortef (hydrocortisone) supplementation, primarily on a thread entitled <a href="">Low Dose Cortef/Hydrocortisone for Adrenals – Jeffries Protocol</a>.

    I think it's interesting to note that William Jeffries' two most often prescribed Cortef doses were 20 mg/day or 30 mg/day. Patients who started out at 20 mg/day and felt no improvement often felt signfificant benefits from increasing to 30 mg/day.

    I am at a loss as to why researchers who are doing the kind of experiments described above appear to not be familiar with Jeffries' work. He spent an entire lifetime specializing in low-dose hydrocortisone therapy, and I would think his work would offer valuable guidelines and clinical data for current and future research.

    Jeffries was quite clear that his patients on low-dose (either 20 or 30 mg/day Cortef) did not suffer adrenal shutdown or adrenal atrophy of any sort. Many eventually were able to wean off it as their adrenal glands rejuvenated themselves. Many however, were not able to wean off, but were able to safely and comfortably supplement indefinitely, sometimes for the rest of their lives, with no adverse effects.

    There are a fairly large number of posts on this subject on this board. Supplementation is not without its risks for people with ME/CFS, but optimal individual supplementation can be a HUGE benefit for some, as it was for me.

    Regards, Wayne
    [This Message was Edited on 03/27/2008]
  3. tonakay

    tonakay New Member

    Lucky me is in the small percent that get recurrant shingles and if I get near steriods I can take it to the bank that I will have shingles in less than four days... don't have a clue why either. Just finished more shingles, they come at least every two months... grrrrrrrr!

  4. achy

    achy New Member

    If I'm in a bad flare my Doc give a tiered dose of steriods.
    It's the only thing that helps.


    I know what steriods does to the body. My father had RA and took steriods for 10+years. IT wound up killing him..a long slow painful death eating his insides.

    warm fuzzies

  5. jasminetee

    jasminetee Member

    experiences with this. That information is invaluable to me.

  6. Waynesrhythm

    Waynesrhythm Member

    Hi All,

    For clarification purposes, the hydrocortisone referred to in the article above is Low-Dose supplentation, taken orally. It does not have anything to do with higher dose hydrocortisone injections.

    Regards, Wayne
  7. tonakay

    tonakay New Member

    so you are saying the steriod shots are totally different? I am thrilled with all this info on this thread!

    Thanks everyone for taking the time to respond with your opinions....

  8. victoria

    victoria New Member

    or due to problems with the new board, it got 'lost'... but Wayne is right, the injections are quite different...

    What I'm trying to figure out right now and searching old threads etc for is whether or not there's a diff between prednisolone and cortisol. The first is all i can find in Mexico. One article I read online said 5 mg of prednisolone = 4X 5 mg of cortisol... which could drastically change dosages for me, as I'm wanting to use this again. (Used it successfully about 5 years ago, weaned off it, but think i need it again).

    I'll be posting to Wayne too... hope he's around... and if anyone else knows, please let me know?! Thanks!


  9. victoria

    victoria New Member

    I'm still having a hard time finding cortef or cortisol in Mexico. So I've settled for 5 mg prednisolone.... just started, hope it works as well as the cortisol did for me before.

    BTW, TonaKay, have you been taking low dose now for a while?

    all the best,

  10. Empower

    Empower New Member

    I went on Cortef (think it is the same thing) and it actually made me worse - my fatigue was worse, couldn't sleep

    Of course, everyone is different.

    The only thing is that traditional doctors think this is a terrible approach and I felt so bad on the Cortef that I had to go to the ER and was reamed out for taking Cortef

    Do some research on it and make an educated decision

  11. victoria

    victoria New Member

    Just wondering, how much were you taking, and did you work yourself up a little bit at a time?

    The cortef/cortisol is supposed to be taken in very small doses, and started off with just a tiny bit and worked up slowly to make sure you only get the amount you need, as different people require different doses.... most times doctors don't want you taking more than 20 mg total, considered pretty much a 'physiologic dose', and it spread out during the day (not taken all at one time). When I took it before, I only needed 18.5 mg of cortisol spread out between 3 doses.

    I've started with 2.5 mg prednisolone........ while I had a pretty good day mentally, it makes me feel a bit on edge. So tomorrow I'm going to back down to 1.25 at 8-9 AM, and then perhaps a 2nd 1.25 mg dose at maybe 2 pm. The synthetic is supposed to be more powerful than the cortef/cortisol.
  12. Empower

    Empower New Member

    I truly don't remember the dosage, but it was small

    Yes, I ramped up taking it and had to do the same going off of it

    Sorry I can't be of more help
  13. romalaw

    romalaw Member

    I have been on 5 mg of prednisilone for 5 years of my 10 years of CFS. It helped me almost immediately, makes such a difference in my energy and level of functioning. As a "side effect" it also helps with my low blood sugar. However, I also think it has contributed to my developing elevated blood pressure. The other side effect I notice is puffiness around my collar bone. Despite all of this, it has been a god send.
  14. mbofov

    mbofov Active Member

    This is not hard to do. Any doctor or naturopath can order the Adrenal STress Index Test which uses saliva samples taken 4 times during the day/evening.

    My cortisol levels were high, so it would have been a disaster for me to take Cortef. So doctors can find out your cortisol levels quite easily, and rather cheaply too (the test is around $100) before trying something like Cortef.


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