Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

Discussion in 'General Treatment' started by TedBakerBoy, Feb 13, 2017.

  1. Sing

    Sing Senior Member

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    I have noticed only benefit from the 5 mg of hydrocortisone I take twice a day. This isn't enough to make me high at all and I haven't had those negative symptoms. I think everyone ought to at least understand that the hydrocortisone which is the same as cortisol which is what the adrenals make--is only ΒΌ of the strength of the same dosage of prednisone. Prednisone also apparently stays in the body longer. The hydrocortisone I take does help balance out my energy, lifting it enough during the day that I am functional.

    Comparing different forms of this hormone drug can be apples to oranges. A physiological replacement dose I have heard might be at least 30 mg a day, maybe 40 of hydrocortisone. And as long as one has an adrenal gland still working, it is very important not to take this much as this will suppress the adrenals. However, some think--and it is my experience--that a low dose of the hydrocortisone/cortisol form, well below the physiolgical replacement dose, can help some people.

    I understand my problem, at least hormonally, to be an underfunctioning HPA axis rather than a "tired" or sick or impaired adrenal gland. It just isn't being signalled enough to meet the normal needs of the body.

    My aim is not to advertise and promote cortisol for ME/CFS, but to speak to the possibility that it can be useful in low enough doses for those who do not have sufficient circulating in their blood. However, as Dr. Edwards writes, perhaps this is mistaken or will eventually be so.
     
    Last edited: Feb 16, 2017 at 11:17 PM
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  2. mermaid

    mermaid Senior Member

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    @Sing I too am using hydrocortisone in small amounts at the moment. I plan to only do this for a short time to get me over a difficult time. I have had 3 cortisol saliva tests done over the past few years, (2012,13,15) and they all showed that I was low on cortisol throughout much of the day (though not low in DHEA).

    I have tried many things since, including changing my diet to restrict any foods that cause me problems, taking many supplements (including the magnesium and Vit C) and herbal support via a herbalist and cutting as much stress as I can. Last Spring/Summer I began to show signs of real improvement, but a series of stressful medical situations (none ME related) all beyond my control sent me downhill again, possibly pushed on my way via an Endo who insisted that I was taking too much thyroid hormone, based on the low TSH blood levels (while ironically I actually felt the best I had done for years). I reduced as he advised and began to get pretty horrible pain symptoms after the 2nd reduction (TSH still below range after 2nd test) soon after I knew that I was struggling again.

    Due to his insistence that I reduce my T3 only meds (have been hypothyroid for 20+ years and am nearly aged 65), I decided to try out NDT instead as it does contain less T3 and to see how I responded (at this point my Endo left his job at the hospital, so it seemed a good time to try, and will maybe ask for a new referral in a few months). I have not been on any T4 meds for 4 years and assume. After a few weeks of NDT I began to get pretty severe hypo symptoms which included a flare of Lichen Planus in my mouth, always a sign to me that I am hypo. Someone helping me with the NDT transfer, suggested I should try a small amount of the HC cream as she knew my adrenals had been low overall, and within 3 days I began to respond to the NDT in a normal way (BP/pulse/temp all OK).

    The longer term plan is that I would try out bioidentical progesterone, and hope that would support me instead of the HC. I am just waiting for that to arrive from the U.S. I was interested in your comments on that @Binkie4 with regard to dependency. Frankly I would rather be dependent on that (I think) rather then the hydrocortisone, and if a body is consistently low re cortisol as I seem to be, then maybe it's a necessity (if it works for me). When you say, high doses of the progesterone, what kind of dose was this? I have been advised to take something like an eighth of a teaspoon for around 25 days and then stop until the new month.
     
  3. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @TedBakerBoy In taking prednisone you are making yourself very ill from the "side effects" of the drug and the lowered immunity which opens the door to countless diseases which will be hard to overcome. Prepare yourself to become dependent, out of work, miserable and begging for help. But remember that you chose this path to hell despite much warning. I will not waste my time on those who insist on going to hell.

    You can commiserate with the other poor folks who have gone there - many at doctor's direction. Just google prednisone hell and you will find countless stories. As my last gift to you here is one account to start.
    http://www.acrockofschmidt.com/2014/04/14/prednisone-is-hell/
     
  4. Sing

    Sing Senior Member

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    @mermaid What I am for is to normalize the circulating amounts of the key hormones that there are medications, etc. for. The problem is the underfunctioning HPA axis and some of the other important pathways. That is my understanding. I have similar issues that you have. While the TSH is the standard test, what I insist my doctor order is the full thyroid panel to show what the circulating levels are of the T4s and T3s. That is what the dosage of thyroid meds I take is aimed to correct, instead of just responding to the TSH test result. My TSH result is apt to send the message, "No problem here!" while the actual levels of operational hormone are too low. When my meds correct the real circulating, usable thyroid hormone (which they now do), I feel and do noticeably better.

    Adequate available cortisol is necessary to signal the thyroid gland, if I remember that correctly, so those work together, as do other hormones, to keep the body in balance. And since our systems, those with ME/CFS, are mostly hypo, a number of these levels of circulating, usable hormone may need to be adjusted upward. Just eating certain foods and taking supplements didn't do the job for me.

    Further, about the hydrocortisone/cortisol I take, a total of 10 mg per day (when the physiological replacement dose might be 30 or 40 mg usually), I can reduce it to half on very calm, easy days, and have been able to taper off to zero for weeks when an endocrinologist wants to find out what my status is without this medication. During such a trial, without any of this medication, my last experience was that I would have an alternating 2 hours of low but ok energy followed by 2 hours in which I needed to lie down and vegetate, succeeded by followed 2 more hours of ok energy, followed 2 more in which I needed to lie down, etc. Interesting! In any case I did not seriously crash or get into trouble, but just did an alternation between a subnormal level and low-normal level of circulating cortisol.

    And finally, I would agree with those who warn folks off of taking prednisone on an ongoing basis. The amounts people are prescribed are often too high--above the physiological replacement dose--and the drug itself, as an artificial form of cortisol, takes longer to break down. However, for bringing people out of medical crises such as life-threatening asthma and other life or death situations, high doses of cortisol in the drug form of prednisone are commonly used in the hospital and may be life saving.

    So it is a matter of using the stuff carefully and apppropriately. A master hormone like cortisol is obviously very important and valuable but it must be used correctly and respectfully, understanding that for all the benefit it can provide, It can also cause cause serious harm.That is my take on the subject, but may not be the whole story that someone with more specialized knowledge could provide.
     
    Last edited: Feb 17, 2017 at 11:22 AM
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  5. TedBakerBoy

    TedBakerBoy

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    guys what's the difference with low cortisol and high cortisol symptoms are the same????!!!!!!
     
  6. Valentijn

    Valentijn Activity Level: 3

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    The risks of low-dose steroids are not nearly so catastrophic as you seem to be proposing. And it's quite reasonable for a patient to weigh the risks of a treatment versus the benefits of that treatment. Of course we'd all like a 100% safe cure, but in the mean time, I can certainly understand why someone would take the risk of long-term complications in exchange for remission from a disease which indefinitely ends any semblance of a normal life.

    It's not the decision I would make at this point in time, but I respect a patient's autonomy in making the choice. The real tragedy is that the patient can't get medical support in assessing the risks, taking the drug, and monitoring for or mitigating possible side effects.

    Is that a promise? :angel:
     
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  7. mermaid

    mermaid Senior Member

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    @Sing So you are also taking thyroid hormones? Do you also take NDT? Yes, I agree with regard to getting the full panel, although in the UK that can be tricky these days with a GP, but Ok if you are able to go to an Endocrinologist, or doing it privately. When I was on T3 only for 4 years, the results became rather redundant (TSH always below range, and FT4 almost disappeared, and I ended up in dispute about FT3 test as Endo and I disagreed about whether you should test soon after taking a dose, or to wait 12 hours to elapse - very different results!).

    Anyway, what you are saying is what I am hoping to achieve myself eventually. I am not quite there yet and it remains to be seen if taking Progesterone will improve my cortisol instead of taking Hydrocortisone, and hence to improve my overall thyroid health.

    Actually I didn't realise (until I looked it up) that you could take HC orally, so I am guessing that you are doing that. Obviously using the cream on my skin, I am very careful to keep changing the place I apply it and as it's only temporary I feel OK about this.

    Have you taken this lower dose for a long time Sing - and what happens do you know after long term usage of low dose HC? I do belong to a FB group STTM re adrenals, so I assume that there are people who do this and improve over time and then come off it?
     
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  8. Sing

    Sing Senior Member

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    I don't know what the appreviation NDT refers to.

    I sure agree that it is hard when we can't find doctors to work with us, who have at least some understanding of ME/CFS and how it might affect the endocrine system. The key idea regarding our condition is "hypo". Since that is the opposite of many other more familiar conditions, many have trouble getting it or applying it.

    Sure you can take hydrocortisone or cortisol in pill form.

    I learned about it especially through the book, Safe Uses of Cortisol by Dr. William Mckenzie Jeffries, mentioned above by another person. Beyond this book, I really have no particular knowledge except that in some studies, the HPA axis tests out in us as underfunctioning, with low circulating cortisol.

    I always had a bad reaction to taking progesterone--instant depression to an unacceptable degree--so I won't use it at all. I have taken low-dose cortisol for a long time and haven't experienced any ill effect that either I or my doctor have noticed. But I certainly wouldn't guarantee this or promote it for another person's health care.

    It would be great if we finally had some good research in this area.

    Good luck with your situation!
     
    Last edited: Feb 17, 2017 at 3:57 PM
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  9. Binkie4

    Binkie4

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    @mermaid I haven't yet read all of the thread ( it's grown fast since I was last on) but will answer briefly on dosage.

    It came in suppository form so do not know how to compare with your dose. In case you want to look it up it was marketed as cyclogest and promoted as natural progesterone not progestogen. I used 2x400mg suppositories from day 10 of my cycle until menstruation, about 16 days and used that dose for about 20 years. Felt great on progesterone.

    For the last 3-4 years I struggled greatly for the 10 days monthly ( total fatigue with grey face) when I had no progesterone. The gynaecologists I saw were unhelpful, until I saw a great one who listened and sent me on to an endocrinologist. As I said the theory was that the progesterone dose had been so high that it was acting as a steroid so I was sort of steroid dependent.

    Withdrawal was lengthy and supervised, about 7/8 years, and I still take a small dose in tablet form. I could no longer work and for the first year of withdrawal was more or less housebound.

    I look forward to reading the thread tomorrow, arguments about present benefit vs future loss.
     
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  10. mermaid

    mermaid Senior Member

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    @Binkie4 Thank you for your post on this. I have looked up the product that's on its way to me and it's called Serenity Progesterone, made by Elan Organics. It seems that this one is just rubbed on the skin, and you normally don't use more than 30mg per day. So that sounds like a much smaller dose than you were using. Did you have that prescribed by a GP?

    One of my problems is that I have recently been diagnosed with osteoporosis, and am trying a number of approaches to improving this. Of course, this is another reason for me not to be taking hydrocortisone for more than a few weeks and I guess is something that you would need to consider. I have just read one of the comments on this cream and it says
    'has been shown to stimulate osteoblast production which results in new bone tissue growth. Most osteoporosis sufferers will be menopausal and should use an eighth teaspoon mornings and an eighth teaspoon at bedtime for 25-26 days of the month and then discontinue for 5+6 days.In the U.S., bone loss begins, on average, at age 37.'

    Anyway, your route to getting off what you were using sounded pretty tortuous so I can understand your reluctance to end up in that kind of situation again with hydrocortisone.
     
  11. mermaid

    mermaid Senior Member

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    Thank you for your comments @Sing

    NDT stands for Natural Dessicated Thyroid e.g. Armour
    I know that many take synthetic hormones T4 and T3 (thyroxine and liothyronine though you may call them something different in the U.S.). I have been taking T3 only until recently, but was previously on T4 only.

    The book mentioned sounds worth a read. I am concerned with regard to my own longer term usage of hydrocortisone as I have just been diagnosed with osteoporosis, so it wouldn't be advisable for me to use it for too long. As it is the Endocrinologist was speculating that I had overused thyroid hormone (though the patient groups I have discussed this with do not agree that I did).

    Just hoping that I don't get the same reaction as you did to the progesterone then! I don't believe I have ever tried it. I am a long time post menopausal now.....I guess we are all in different situations here - male/female, younger/older, and bodies don't all react in the same ways. Good luck to you also!
     
  12. TedBakerBoy

    TedBakerBoy

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    No Side Effects as of yet, I've started playing Football and organising a match for my college i feel like a king, I don't feel high i just feel normal like i did before the fatigue.
     
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  13. Binkie4

    Binkie4

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    @mermaid I was prescribed Cyclogest( progesterone) by a Harley Street gynae in 1979, referred by my GP. I was experiencing vvvv bad premenstral syndrome with especially bad depression which began after the birth of my second child. Life was a nightmare. My GP noticed it was only for half the month, and the other half I was fine.

    Cyclogest was like a miracle, 3 days and huge improvement. Mood good and stable. I continued on it until I had problems 15/20 years later. The gynae had advised me I would need it until the menopause. Gynae retired by then so...........as described before.

    I wish you luck in sorting out your problems. I do not know how to estimate respective doses. Mine I suspect was very high. I still slightly wonder about hydrocortisone- would love some improvement but hormones are powerful, not to be underestimated from my experience.
     
  14. Sing

    Sing Senior Member

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    It is interesting to read how one hormone can sometimes turn into other hormones depending on the body's perceived needs, so whatever we are taking may not be what uses the body turns it to. I just googled this subject and see information there. I do wonder how often some of the different experiences people here report while taking different hormones could have to do with what those hormones turn into, rather than always the specific hormone we are taking.
     
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  15. erin

    erin Senior Member

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    Apparently vitamin D is a hormone too. One study in Iran experimented with vitamin D + coconut oil made into suppositories used as a estrogen replacement for menopausal women. And it was successful with no side effects, women with atrophy got better.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4387645/

    Tedbaker boy, sorry to divert the thread. But maybe vitamin D could turn into cortisol too? No side effects. However the type of vitamin D used in the study is Rocatrol, cannot be bought OTC in UK.
     
    Last edited: Feb 19, 2017 at 11:00 AM
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  16. stridor

    stridor Senior Member

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    @Binkie4
    I see where you are coming from with this. I am afraid that I am not really able to comment well because I don't know that much about progesterone. I think that pregnenolone is the precursor for the steroid family though.

    Being the same family of drugs, it wouldn't surprise me if some effects and side effects are shared. (In a sex-dependent way for some.) It doesn't sound very pleasant what you went through.

    I don't advocate anyone exceeding what the body was designed to handle when it comes to hormones unless it is short-term treating an acute condition or long-term where other options are slim - Crohn's for example.

    I also wonder sometimes about my 7 ++ corticosteroid receptor SNPs. These are by no means rare and likely mean little but who is to say that there are not people who need to reinforce cortisol levels. I also have some ++ and +- for corticotropin releasing hormone receptor and I wonder if this would contribute to sluggish adrenal response.

    I have been treated for mycoplasma as well and some of these appear to downgrade (and sometimes upgrade?) cortisol receptor sites responses. There is way too much to learn here but I would try if I thought it would help my case at all.

    Rats fed mercury long-term have adrenal damage. Autopsy showed the adrenals to be bleeding. Interestingly, they posted normal a.m./p.m. cortisol levels but they tanked (pun intended) when they were forced to swim. This is very similar to the type of symptoms that some people get around here.

    I walked around for decades with enough mercury on board to warrant the diagnosis of Bipolar Disorder. I expect to be on HC for the rest of my life. Prior attempts to taper failed miserably. I would not recommend that people venture into this arena without careful thought but for some of us it is a necessity of life.
     
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