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XMRV and hydrocortizone, is this a problem?

Discussion in 'XMRV Testing, Treatment and Transmission' started by anniekim, Mar 24, 2011.

  1. anniekim

    anniekim Senior Member

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    I've been on 10mg hydrocoritzone now for five years. I've not done a blood test for XMRV and I know there is still much to be researched about the role of the virus in CFS/ME. However, I have read some posts that say cortisol can increase XMRV. Would hydrocortizone possibly increase the XMRV?

    I am pretty ill at the mo, mainly confined to bed and don't feel well enough to try and come off the hydrocortizone, but the posts about XMRv and cortisol are worrying me a bit.

    Any opinions most gratefully received. Thank you
  2. Cloud

    Cloud Guest

    Hi AnnieKim....Many have had this same question. I used to follow Dr Cheney's idea that our systems (including endocrine) are down-regulated for self protective reasons, and because of this, I refused to take cortisol even though showing adrenal insufficiency. But I now feel that Dr Judy has it right suggesting that hormonal supplementation when used for a shown deficiency and that brings blood levels into normal, is fine (And she is the one who first stated that cortisol increases xmrv replication, in vitro). So, I think she is right because we need normal cortisol levels for healthy immune and other physiological functioning. I now use herbs for the adrenal support...but, I wouldn't have a problem with taking Cortisol as long as blood levels remained inside normal.
  3. Wayne

    Wayne Senior Member

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    Hydrocortisone / XMRV

    Hi Annie,

    I've been doing 20-25 mg/day of Cortef for about 12 years now, and do very well with it. I too have read that cortisol can activate/increase XMRV. Although I don't think it's been definitively proven, I do feel it's something to consider. A more important consideration for me is my own conviction that raising my cortisol levels to normal improves my immune system function, which then has a greater ability to deal with pathogens of all kinds, perhaps even including XMRV.

    Although I believe I do have a dysfunctional immune system as a part of having ME/CFS, I feel it is significantly stronger than if I weren't taking my low-dose hydrocortisone. This is my experience, and is what works for me, but we're all different. This might be one of those things that is hard to quantify objectively, and so we are left with choosing what we feel is intuitively right for us on an individual basis.

    Sorry to hear you're very ill at the moment. This alone would make me think twice about altering a program you've been on for five years now. Your relatively low dose of 10 mg doesn't strike me as being overly concerning, so I think you have the "luxury" of taking plenty of time to review this for yourself. It seems to me patience might be the best approach at this time; no need to rush to a decision.

    Best Regards, Wayne
  4. Sing

    Sing Senior Member

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    I use 5 mg cortisol/hydrocortisone twice a day with good results, and have for 12 years. Reading that Dr. Judy thinks it is fine to supplement cortisol when needed to bring it up to a normal level is a big relief. It has always seemed to me that using cortisol, in my case, has definitely improved my immune function as well as energy and overall sense of physiological balance.
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    My

    My doc says that her dose she is giving me is just to bring it up to physiological levels, I think she said. So I should not be concerned about it.

    However, she is not keeping up with XMRV and only knows there is a study that says it is a possibility. And she is not an ME/CFS expert. She is integrative.

    So, I was afraid. But I am going back on it now.

    Oh, and I don't know my XMRV status.

    Tina
  6. Cloud

    Cloud Guest

    Being xmrv+, I was quite concerned about this issue too. But I believe that increased stress (physical or mental), is more of a concern for excessive cortisol than correctly supplementing a deficiency. I suspect a horror movie, an argument with a spouse, or a brisk walk around the block, is much more of a problem. But, if you took more Cortisol than needed and sat there gritting your teeth....that's a problem and may be party time for xmrv. Taking the amount needed to reach normal levels, seems to have benefits that outweigh the potential hazards, and therefore seems the right choice. Normal blood levels of Cortisol supports immune function...too much further suppresses it. Monitoring labs is vital, but I also like Wayne's idea of listening to you body and how your feeling.

    Since many pwc's can't take cortisol, I think it says a lot that you've been able to stay on it for years.
  7. brenda

    brenda Senior Member

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    I have avoided hydrocortisone to assist thyroid supplementation as I have Lyme bacteria but I have discovered Pregenealone which is a percuser of the adrenal gland steroid hormones. There is a thread about it. It has none of the side effects of hydrocortisone which suppresses the immune system like all steroids and many would consider 20mgs not to be a low dose. I started it a few days ago and the results are amazing but it is best to keep the dose low.
  8. Cloud

    Cloud Guest

    Low dose Cortisol that brings ones blood levels in normal range, does not cause immune suppression. Normal levels are required for healthy immune function. Higher doses that will push blood levels too high, will cause immune suppression. Many of the other Rx steroids, such as Prednisone and Dexamthazone, are much more powerful immune suppressants that Cortisol.
  9. Wayne

    Wayne Senior Member

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    High Dose / Low Dose Hydrocortisone --- Immune Suppression

    Hi Brenda,

    William Jeffries, M.D., who devoted his entire medical career researching and then treating patients with low-dose hydrocortisone supplementation, believes the average person makes approximately 40 mg of cortisol per day. His experience was that most people who needed supplementation usually needed approx. 20 mg/day; some needed as much as 30 mg/day to bring their cortisol levels up to normal. He considered these amounts to be low-dose, as they were much less than the amount the body normally makes. He rarely saw side effects in his patients who took these amounts; virtually all of the effects were beneficial.

    It's the higher doses that are well known to cause immune suppression. Synthetic compounds like predinisone, which are generally 4x stronger than bio-identical cortisol, are often given in amounts much higher than the doses Dr. Jeffries used. Common doses of these compounds can reach as much as 50-100mg (equivalent to 200-400 mg cortisol), and so if used for any length of time, will cause serious immune dysfunction.

    That said, I doubt Dr. Jeffries had very many patients with bona fida ME/CFS. If he did, he might well have had more patients who had side effects, perhaps some of them even being severe. If that was the case, what he considered low-dose would definitely not be low-dose for these kinds of patients. Just another instance of standard medical approaches that sometimes don't work at all for PWCs. I feel very fortunate that I can take 20-25 mg/day without any adverse effects. For me it's a very safe and very consequential supplement; I would most likely have less than half the functionality I currently have without it.

    Best, Wayne
  10. brenda

    brenda Senior Member

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    Hi Cloud

    "Low dose Cortisol that brings ones blood levels in normal range, does not cause immune suppression. Normal levels are required for healthy immune function. Higher doses that will push blood levels too high, will cause immune suppression. Many of the other Rx steroids, such as Prednisone and Dexamthazone, are much more powerful immune suppressants that Cortisol."

    The suppression of the immune system is the reason why there is advice for those with Lyme not to take it and where there are two opposing opinions, I choose to go for the safest option.

    Hi Wayne

    Yes precicely, no studies being done on severely ill patients and this is why I am not in a hurry to accept statements that HC is safe and especially since I have read many stories of people who became worse taking it and even after a year since tapering, are still not recovering. It is too risky for me and that is why I continued to research to find an aternative. Even if I had started to take it and seemed to be somewhat better, I would not pressume that all is well inside long term. By taking the percuser preg, the body is given the tools to make its own cortisone and do whatever else medical science does not know about yet and it has a safe track record when the dose is kept low especially long term.
  11. bertiedog

    bertiedog Senior Member

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    Sorry to hear you are confined to bed.

    My understanding of cortisol is that if you only take 10 mg daily you actually lower your already low production of cortisol. For it to make you feel better you probably need to take at least 20 mg daily in divided doses.

    I have been taking Prednisolone equivalent to 20 mg h/c plus 2.5 h/c x 2 daily for over 8 years now and it definitely has helped me. One of the reasons I need a little more cortisol is that I also have thyroid disease and in order for me to take thyroid meds I have to take a bit more steroid. I take some T3 each day and this seems to eat up the cortisol.

    I am XMRV + but I can see I do a lot better than the majority of XMRV + patients so my conclusion is that if one is only taking a physiological dose as against a pharmacological dose that doctors usually give with steroids we are actually supporting our immune system and body not weakening it.

    Having said that I do have a big problem in the winter with throat infections that can go on and on so I know my immune system is affected.

    At the end of last year I had a DEXA bone scan because my GP was convinced I should be on bone supporting meds because of the steroids. I didn't want to take anything I didn't need, hence I suggested the scan. Well it came out I had the bones of a 30 year old at their peak whereas I am 63! My GP couldn't understand it but it sort of bears out what Dr Jeffries says in his book Safe Use of Cortisol. I also take lots of supplements and very much believe in helping methylation.
  12. bertiedog

    bertiedog Senior Member

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    Your statement above is only correct if everything is working perfectly with the endocrine system and this is just not the case with ME/CFS.

    With Preg you do not know what it is going to convert to. Cortisol is at the end of the line. For instance you might get more DHEA and this is the last thing you need if you have low cortisol.

    With our condition it makes much more sense to take what you need and if you are low in cortisol you need cortisol and not extra estrogen or androgens. Many doctors say you don't know what you are messing with by taking Preg. For some people it might well work for others it won't and can make an imbalance a lot worse.

    I have to take Prednisolone 5mg daily plus 2.5 mg h/c twice daily and have been on this for over 8 years. All my blood tests are excellent and also my bones are that of a 30 year old despite me being 63 so its enough evidence for me that what Jeffries said is true. The reason I need Pred is because it is longer acting and that suites me, h/c used to run out too quickly giving me artificial highs and lows. I should also add that I take some T3 daily to treat my thyroid because I have autoimmune thyroid disease too and undoubtedly this contributes to the good results that I get.

    Pam
  13. garcia

    garcia Aristocrat Extraordinaire

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    In my experience Jeffries book was absolutely useless for ME/CFS. If you have a moderate-severe case like I do you will not be able to tolerate steroids. Milder people may be able to tolerate, and even do well on them.
  14. Cloud

    Cloud Guest

    Many pwc's cannot tolerate Rx Cortisol....but I suspect it has little to do with disease severity. My worst periods of medication intolerance were during my mildest years of illness. Those who are deficient and can tolerate supplementation, are in luck. Of course the final call should be with ones doctor.

    Rx Thyroid supplementation does create more of a demand for Cortisol.
  15. garcia

    garcia Aristocrat Extraordinaire

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    Cloud, when you say "medication intolerance" are you referring to hydrocortisone or medication in general?

    I don't have medication intolerance as such. I do however have a severely disrupted HPA-axis which makes me intolerant to anything which raises cortisol (natural or synthetic).

    According to Cheney the low metabolic output of ME/CFS is an adaptation to oxidative stress. This certainly fits in with my experience. On the brief periods I did manage to stay on hydrocortisone & thyroid I experienced what felt like a great deal of oxidative stress. If Cheney is right then sicker people (with greater oxidative stress) would do worse with hormonal replacement since the adaptation is more necessary in their case, and they are less able to tolerate the demands of a normal level of metabolic functioning (lower glutathione, lower methylation capacity etc.).
  16. Cloud

    Cloud Guest

    Hey Garcia, Yea I meant medication intolerance in general. But I do understand what you are saying with how degrees of medication intolerance could correlate with level of illness severity with that particular (HPA) pathology. I know that generally the medication intolerance is neurological (HPA), but for myself, it also includes the metabolism and detoxification abilities of the liver. I like to believe that I can tell the difference even though they most often go together anyhow. A neurological reaction seems to happen quicker and harder. Anti-depressants are good example of that with me. They will put me down hard within 48 hours, whereas a med intolerance due to poor detoxification, builds over more days and feels more like becoming toxic. Many times the 2 happen together.

    Maybe more to your point is the reaction I get from the meds that push my system to work harder. They would all push me into a crash. But, I have also become able to tolerate many more meds (including Cortisol), only after much methylation work.

    Very interesting topic. I appreciate your views on this.
  17. omerbasket

    omerbasket Senior Member

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    This is a complicated question, for at least two reasons:
    1) If you're cortisol (or cortisone, should I say? Does the difference matter?) level is too low - it's might be a question of what's making you feel worse - XMRV's replication or the low level of cortisone? Perhaps the only way right now to figure that out is to drop the cortisone - but I don't know if that would be a good idea. Anyway, if you do drop the cortisone, this should be done with instructions from your physician, because when people are getting of cortisone supplementation they should do it slowly (for example - you take now 10 mgs a day - he might tell you to take for 4 weeks 9 mgs a day, and then 8 mgs, etc. - although I can really be wrong about the dosages or the time, as I've never took cortisone in this dosage for five years).
    2) It's really tricky: On the one hand, cortisol does induce XMRV replication. On the other hand - inflammation also induces XMRV replication - and it was shown in a recent study that inflammation with TNF-alpha or something that EBV does, are causing XMRV replication, and if I remember correctly that replication was induced to the level that androgen were shown to induce XMRV replication. Now, for example, both testosterone and cortisol induce XMRV replication - but testosterone helps XMRV to replicate much more that cortisol does. Anyway, the last paper said that it's probably the NF-kappa-B pathway that TNF-alpha and EBV induces, and which in turn induces XMRV replication. And this is the interesting part: Cortisone is anti-inflammatory - so while cortosine by itself can help XMRV replicate, if you have an inflammation its anti-inflammatory abilities might be more efficacious against XMRV replication than the ability of cortisol to induce XMRV replication. It's a question - what is stronger. As I've said, since it seems that the importance of the TNF-alpha-EBV-NF-kappa-B (inflammatory) efficacy seems as important of the efficacy of androgen (IF I'M NOT MISTAKEN - the paper should be read again in order to make such a conclusion, it might be that I'm making a mistake), and since testosterone is more important for XMRV replication than cortisol - it would seem that TNF-alpha/EBV/NF-kappa-B are more important to XMRV replication than cortisol. However - the question is: How much inflammation do you have? I mean, cortisone is a great anti-inflammatory, but what if your inflammation level is low or non-existent? Or, what if it was high, but now it's non-existent because of the cortisone, and the cortisone is now just helping XMRV to replicate, and it can't act against it since it has no inflammation to reduce? And then the question would be: If you'd stop the cortisone, would the inflammation come back? And to what degree?

    So I think there are a lot of questions not enough answers - but at least we know some things that might lead us in the correct way - and the decision what to do, I believe, should be taken by you, as there seem to be risks, but it's possible that there would be gains.
  18. bertiedog

    bertiedog Senior Member

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    When I am running low on cortisol which is late evening I can feel signs of inflammation which just aren't there during the day. After a good night's sleep they are more or less gone usually even before the meds kick in.

    I think there is another point to consider. If there is insufficient cortisol its natural to have inflammation and its also highly likely that the thyroid won't work properly either because one needs sufficient cortisol for the T4-T3 conversion to work. If the thyroid isn't working you will have even more inflmmation. The thyroid is also involved in methylation of every cell in our bodies so there is another important connection as to why if one can balance cortisol and thyroid one can feel well enough to be reasonably active even if XMRV+.

    Before having treatment of my thyroid/adrenals I could barely get off the couch I was so dizzy and ill and used to react to everything, I felt I had no life. Again that has all changed with treatment most things just feel more normal but I still cannot tolerate wheat, MSG, sugar or alcohol and I have to be careful and pace activities.

    I have arranged many 24 hour saliva tests for DHEA/Cortisol for many ME/CFS sufferers and they have always come back showing in some cases a huge deficit in cortisol. I have never seen a case of too high cortisol in this illness.

    Pam
  19. anniekim

    anniekim Senior Member

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    I've been taking T3 and T4 for 12 years, still didn't prevent me sadly from badly relapsing a few years back and being very immobile now for last seven years.

    Thank you for the replies that taking cortisol to supplement what you are not making shouldn't cause problems with XMRV (which i know is in the speculation stage), this was a relief to hear.

    I hadn't heard what one poster said that taking a steriod at 10mg could cause you to have even lower cortisol than if taking at 20mg. My NHS doc measured my cortisol levels a while back and they are back within the normal range.

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