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Feel better on Prednisone?

Discussion in 'General Treatment' started by Nielk, Jan 15, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    dosages used for treating anaphylaxis and allergies etc is alot higher then those doses to treat low cortisol levels though. 1-2mg/kg are used for say asthma, where when used for low cortisol doses of 1-2mg total are used. So it doesnt seem the same comparing the 2 levels of dosages. Im thinking more to balance hormones to normal levels??
     
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  2. AFCFS

    AFCFS Senior Member

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    [​IMG]

    (from the site: Adrenal Fatigue and Hormone Therapy)

    Arrgh! - I am wondering if one needs cortisol, if could just take the Pregnenolone? I had one doc tell me to take Pregnenolone and DHEA. On a blood test, Pregnenolone was in range but low, and DHEA was low, mid range.

    Then another doc told me to get off of all supplements that I did not have a direct positive effect from. Some of these type supplemets are works in progress, but I ditched them on that advice. Then another did the ACTH test that was quite low and suggested a visit to an endocrinologist for further evaluation/testing. Further stating that ACTH is a hormone made in the pituitary that stimulates the adrenal gland to make cortisol and that I might benefit from cortisol. The same doc told me not to go back on DHEA b/c in men it may evetually end up as estrogen, which was not a good thing. Roughly described here:
    Per comment by Nielk - I am also very much aware of becoming dependent on meds like Klonopin and would rather not toast my adrenals with some direct input of cortisol if there was a more natural way around it (e.g. Pregnenolone).

    So, am ultimately wondering if the Pregnenolone can cure the cortisol ills without doing long term damage that may be incurred with cortisol direct input?
     
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  3. AFCFS

    AFCFS Senior Member

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    Much more, at the link, but here is an excerpt from the link Adrenal Fatigue and Hormone Therapy:
    So, if one can forgive the author from using the term "Adrenal Fatigue" there is obviously some complexity in here, and not sure exactly how it is to be dealt with. I would not mind having my doc set me up on a dose, but would really not want to have to call them every time I thought I was trending in the wrong direction. Anyone come across the paradoxical reactions and effectively deal with them?

    Not to confuse the issue, but here is another article: Hormone's Benefits Include Enhanced Mental Function, Decreased Cortisol, and Improved Mood

    And then this article, Pregnenolone, with this safety note:
    As well as this: Pregnenolone: Scientific View and Its Outweigh Benefit

    So, while many of its benefits seem appealing, there is a bit of a dark side to it, but, to the topic at hand, am wondering if it is still a better choice than a direct cortisol intake?
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good thing about pregnenolone and dhea which is different to other hormones is that there is no negative feedback issues, eg say testosterone, if one took it then the body would stop producing its own testosterone levels, apparently this isnt the case with pregnenolone and dhea.

    Those hormone charts take as a guide as they dont always flow down like that. preg can increase cortisol but not in everyone, really need testing to see where it goes, for some it may increase progesterone or dhea, for some all three. For me it increased cortisol and testosterone but not the other hormones which is strange, especially dhea as u would think it would have to convert to dhea before converting to testosterone, but this didnt seem to be the case.

    When i first started preg i got really over stimulated badly and felt yuk. I always thought it was just increasing cortisol too much. Recently i read something called thyroid dump and this occurrs as when cortisol is increased after being low, it helps the body to use thyroid hormone. I think in those with adrenal fatigue, they say are also hypothyroid(high reverse t3 anyway) but thyroid hormone is still in the blood and tissue floating around not being used until cortisol is increased. When this happens its sort of like having an overdose of thyroid meds initially, where there is increased agitation, sweating, palpitations etc etc so when its said to go low and slow i think its more important when increasing cortisol with preg or hydrocort for this reason. even dhea initially did this to me.

    Over time i have slowly increased dhea and pregnenolone and they have played their part in helping me. progesterone can also help with increasing cortisol too and for some can help with sleep as it can improve gaba receptor sensitivity. Might be helpful for those try to come off benzos too??

    I think its important to have healthy blood levels of hormones but i think in me/cfs we have to do it slowly and in much lower doses then normally recommended. Pregnenolone cream is said to be alot more affective then tablets, dhea i think tabs are said to be better mainly because they are alot cheaper and just as affective. I would recommend using doses of 5mg at a time and slowly increasing in 5mg increments while no adverse symptoms, maybe even using every second day. 50mg of preg and 25mg of dhea is a good dose to aim for, going off blood tests is ideal.

    cheers!!!
     
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  5. AFCFS

    AFCFS Senior Member

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    Yea, the charts are useful but they also make things look like a nice linear function, which is not the case. After reading more about this, I did find (http://www.lef.org/magazine/mag2004/jun2004_report_preg_01.htm):
    So, maybe in your case, the Pregnenolone is changing into progesterone then cortisol and androstenedione in a snap, then to the testosterone, while bypassing the DHEA - as it is not needed in that given moment? At one point I had a doc that had me on a really high dose of Pregnenolone and DHEA. I can now see the small and gradual ramp-up to make more sense.
     
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  6. MishMash

    MishMash

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    Plenty of MS patients, particularly middle-aged females, have to take repeated rounds of steroids (I think prednisone is one of them). And some of them have to get knee and hip replacements. There is a problem with bone weakening, breakage. Tread carefully if you take this stuff on a long term basis.
     
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  7. Tammy

    Tammy Senior Member

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    I would only consider taking steroids like prednisone for an emergency type situation............otherwise I would avoid them at all costs. jmho.
     
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cortisol steroids we are talking about doses that bring ones levels are to normal not high doses used to decrease inflammation in conditions like arthritis, asthma etc. Theres a big difference between the 2. Having low cortisol levels can have just as many side effects. Its all about balance.
     
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  9. PNR2008

    PNR2008 Senior Member

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    If Im understanding you heapsreal, (I never know with this brain fog) then for the emergency situations like bactrim reaction, wasps and yellow jackets stings, and even an inflammation of my spine twice that really scared me, the large doses don't affect me but the tapering off does? It seems odd but intervenous steriods feel like nothing but probably save my life. Yet taking the tapering pills sends me in orbit. My mom had RA and needed pred to function, my cousin has transverse mylitis and needs pred for relapses, she says it feel wonderful to have no pain, another aunt had addison's and took pred everyday. I feel terrible whatever I take. Weird.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think thats one of the mystery of cfs/me, what helps one can make another feel awful. Also what makes u feel bad one time and as ones physiology changes with this illness that same treatment can do the reverse. treatment is all about educated guess, trial and error.

    Different things i have tried for adrenals have made me feel terrible, mainly when my adrenals were really low which was noted on testing dhea/cortisol, apparently adverse reactions are more common when adrenals are really low. But since i have slowly improved my adrenal function with dhea/pregnenolone the adverse reactions have reduced. one eg is i use to be able to tolerate siberian ginseng earlier in my cfs/me, about 2 yrs ago when testing showed my adrenals trashed, i tried ginseng just 1 pill and it over stimulated me and i felt terrible. The other day out of curiosity i took the same brand of sib ginseng and had no issues at all. Dr lams web site on adrenal fatigue mentions this. SO i think many of us have adrenal issues but we have to be very careful how we go about treating it as we are more prone to these adverse reactions. If pregnenolone overstimulated u then maybe try ultra low doses and build up slowly or try another method, maybe ultra low doses of dhea or herbals. I think its very tricky and individual and a bad reaction can be scary thing too. Its hard to find a good doc to work with this stuff too.

    Adrenals also are only part of our problem, sometimes fixing them doesnt improve us until we get other issues sorted like an infection etc. its a piece of the puzzle??
     
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  11. YvieArtist

    YvieArtist Artist and survivor.

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    Hello all. I have been to an endo doctor and scheduled for a ACTH test on Wednesday for the cortisol levels. I have been getting worse and mostly on my sofa now and can't do much at all. Shower knocks me out, I can make my bed and get pizza out of freezer to eat at least. Some family members help me shop for groceries and wash. Live alone and this is the pits! When I was on Prednisone almost all of my symptoms went away back in June, but other doctor did not want me on it for long. My new lab tests did show low cortisol levels so new endo doc wants this test done. Hopefully I get treated for this low cortisol. I'm hoping to get some of my life back. (Had this bad relapse for two years now) Had ten good years prior to this relapse which happened as to overwork trying to support myself. Now on SS retirement, thank God!
     
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Of late my pregnenolone cream i have noticed doesnt seem to be as affective as it once did, but i have been using the same jar of preg cream for 2 yrs now, lasted so long as i didnt use as much. The compounding pharmacy put a 3 month expiration date on it but i found it still working even after 12 months or more. I have a new jar that i havent used yet but today i thought i would try it, wow! i now know my old cream had definately expired because the new cream is working well. old jar is in the bin. This might be why i have been tolerating higher and higher doses of pregnenolone. Definately more energy, maybe better cortisol levels??

    lesson learnt, keep eye on expiration date of preg cream, if older then 12 months then bin it??
     
  13. sunshine71

    sunshine71

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    The doctor gave me a short course of prednisone for tendinitis last week. It made me feel so much better! I actually felt normal again.
     
  14. m1she11e

    m1she11e Senior Member

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    I've posted about this before but I'm back researching how to get the prednisone effect without using prednisone. This is the second time in my life I have taken the full dose of prednisone. I try to keep some on hand to get me through an outing I can't miss out on. That's usually 5-10mg a handful of times a year. But this is another actual high dose round and I am nearly cured.

    I get numbness on the right side of my face. My doctor thinks it's HHV6 or one of them acting up in cranial nerve. After having dental work the numbness and weakness got really bad. It was slowly falling, I was having trouble talking a little, and could visibly see the side of my face was slightly falling. I know all about Bell's palsy and it is usually sudden onset. I've been dealing with this off and on for years but after dental work (mercury free) it kicked on bad!!!! It was scaring me. I also get what feels like swelling behind my right eye and it's hard to track and the eye muscle gets slightly lazy. Vertigo kicked in as well and my brain just felt swollen. Finally I asked for prednisone. My doc knows I research like crazy and gave it to me.

    By day two there were no signs of numbness or weakness in my face or eye and I felt amazing. I'm pretty sure I felt totally normal. I've been sick for over 30 years so when I say normal I have to really do a body check. My husband never notices or listens when I say I think something is helping cause usually it's a fluke. This was undoubtedly different. He asked me "so how bad is this medicine your taking??" My day started at 6 when my husbands alarm went off. I usually am in a coma at that time and go back to sleep. I woke and nothing felt sick. I expected a nap later but never needed it all. I believe every symptom was at least 90% better and I don't say 100% because it was so surreal. It was a very full day that ended with a late dinner and drinks. I felt like a normal living person.

    I rarely drink due to horrible hang overs that leave me bedridden the next day and feeling crappy for another 2 days. I barely even had a headache today. It's inconceivable.

    I have this bottle with 2 more days at the 40mg a dose. I do feel just like the movie the awakening. I know all about prednisone side effects and would never stay on it at this dose. 5-10 mg help buy not this dramatically. I'm trying to figure out how to use this information to help me without the ongoing use of prednisone. It's gotta mainly be the anti inflammatory action that's helping me as Cortef just makes me feel wired and tired. I believe inflammation is auto immune related and auto immune is pathogen related. I'm on high dose anti virals, have done the oral Lyme protocol, done the mycoplasma abx protocol and believe fungus and mold could be an issue too and have worked on that most of my life as well. Going after the pathogens have not yet helped my illness though.

    I had a really high white cell count for the first 20 years of this illness but no inflammatory markers. Now my WBC count is very low. I assumed that meant I couldn't be auto immune. If you don't have an army how can it attack you? My doctor said it can be in the tissue attacking me and not so much in the blood?? We have never broke down the details of my immune system.

    I'm trying to put together a combo of the best anti inflammatories but I want the ones that mimic what cortisol shuts down as close as possible. Turmeric in high dose has done nothing. I may try Cortef again too. I'm considering seeing if when I'm in a bad flare as I was this time if I can is a round of steroids from time to time. Hoping to limit those to very few rounds.

    There is a man who used to post in other forums that had my exact experience. He started out far sicker than most. He was give prednisone for something else and felt the awakening. His doctor played up and down with the prednisone keeping him feeling cured. They tapered to 5 mg a day (which is supposed to not suppress adrenals). Cortef didn't have the same effect for him either. He had to bump up to 20mg a few times but mainly stayed at 5mg for 9'years and weaned off. He is totally healthy.

    Just researching as I know my few days of normal are almost done....

    Thoughts????
     
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  15. nandixon

    nandixon Senior Member

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    @m1she11e

    I'm not a doctor, but what you've described sounds similar to multiple sclerosis symptoms and an expected response with respect to prednisone, from what I've read. Has MS been ruled out for you by your doctors? (Hard to believe it wouldn't have been after all these years...)
     
  16. Crux

    Crux Senior Member

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    Hi @m1she11e ,

    Since prednisone doesn't have mineralcorticorticoid, (sodium retaining activity), and cortef does; I would guess that the stimulatory side effects may be from that.

    Cortisol is supposed to increase naturally when we have infections, but for so many of us, it doesn't.

    I suspect that pathogens are good at preventing us from putting up a fight.

    I've had many of the symptoms you describe, and I take physiological dosages of hydrocortisone, HC. My pituitary produces almost no ACTH. ( don't know the origin, suspect it's infectious)

    One reason I suspect an infectious cause to this partial pituitary insufficiency is that I've had many oral infections.
    Dentists have denied this, only to discover large amounts of pus when extracting teeth, or removing a failing bridge.

    This time, ( failing bridge, dental infection, cracked root, etc.), I'm taking a higher dose of the antibiotic, clindamycin, to penetrate the tissue, and hopefully turn this process around.

    I've read about how oral bacteria can spread and infect surrounding tissue, sinuses, brain, even gut.

    It seems to me that the pituitary and other organs nearby would be attractive to bacteria and other pathogens.
     
  17. m1she11e

    m1she11e Senior Member

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    Thanks
    I appreciate the response. I've been tested for MS many times actually as I have a lot of neuro symptoms. I suspect it is all the info that is coming out all the time about our bodies being riddled with inflammation. The more I read, the more I think it is the inflammation. Thanks though!
     
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  18. m1she11e

    m1she11e Senior Member

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    Oddly, I don't get the same miracle response to low dose hydrocortisone. The prednisone miracle resurrection only lasted a few days. A day after I posted this I felt super wired and tired. I am now trying the physiological dosing of HC again. I've tried it many times in the past and just get tired and wired and then crash hard mid afternoon. I was reading a bit and instead of backing off of the HC when I feel worse on it I've been taking more. A lot to explain as far as the reasoning. I'm taking about 25mg a day currently. It doesn't do what those few days on prednisone did of course but it does increase my energy some.

    Oral infections....I believe this is an issue with me as well. I cannot afford a biological dentist to properly check for infection in the jaw. The regular dentist says I am fine. There is constant pain in the right side of my face and I think it is activating at least the herpes viruses to flair. I suspect there is all kinds of pathogens in there though. That is a never ending battle and very expensive to remedy. I may do antibiotics again. I've read oregeno oil is very effective for osteomyelitis in the jaw bone. Might be worth adding.

    Oh the puzzle....
     
  19. Crux

    Crux Senior Member

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    That's awful news about your pain and inflammation, @m1she11e ,

    I used to get it too, in the lower jaw ; then I would get shooting pains, tmj, frozen jaw, redness, swelling in the gums.
    I guess the dentists would have to take a culture to figure it out ? Lymph nodes would swell and harden.

    I've tried a number of essential oils....they help. They can really burn tissue if not diluted, though. I've done that so many times.

    Haven't read about oil of oregano for osteomyelitis. Sounds great.

    B12 subs. helped also.
     
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  20. nandixon

    nandixon Senior Member

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    Just to double-check: So you've had at least one brain MRI done, is that correct? That would be the most definitive test for MS, if I understand correctly.

    There's definitely some sort of inflammatory process that's a part of my ME/CFS, I agree with you.
     

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