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anti-androgen med seem to be helping me: spironolactone

Discussion in 'XMRV Testing, Treatment and Transmission' started by Rrrr, Jul 13, 2010.

  1. Rrrr

    Rrrr Senior Member

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    i posted this below info on another thread
    (found here: http://www.forums.aboutmecfs.org/sh...-replication-of-XMRV&highlight=spironolactone)

    but given my good results taking this med, i've decided it is time to dedicate a whole thread just to this med. here is what i posted in the earlier mentioned thread:
    _____

    originally posted on july 8, 2010:

    there is this med that lowers androgens. it is called spironolactone.
    http://en.wikipedia.org/wiki/Spironolactone

    i took it for years to lessen my body hair that i get from polycystic ovaries. a few years ago i stopped taking it on a whim. and then i got much sicker. i did not put one and one together until i heard judy mikovits say in november 2009 that cortisol, estrogen and androgens make xmrv reproduce.

    so last month i asked judy if, in theory, spironolactone would help lessen xmrv due to its anti-androgen effects. she said yes, in theory, and she wants to test it in the lab. (i doubt she has, given all the politics happening. but i'll ask her again.)

    so i went back on spironolactone a few weeks ago, at a tiny dose, and started to do somewhat better. and my brain started working better too. less brain fog.

    then just 6 days ago i doubled the dose and within 2 days felt a lot better. a lot. so it is only 4 days of doing better. but it is curious how linked it is to the spironolactone.

    does anyone want to experiment with this and get a prescription of spironolactone and try it yrself? i'd love to hear if anyone else gets help from this med. it is easy to take. no side effects in me (over the years) except a bit more liquidy period, less clotty (eeeeeeewww! too much information!!!!!)

    i'll now repost some earlier posted info, as it relates:

    Androgen Stimulates Transcription and Replication of Xenotropic Murine Leukemia Virus-Related Virus

    Beihua Dong and Robert H. Silverman*
    Department of Cancer Biology, Lerner Research Institute, Cleveland Clinic, 9500 Euclid Avenue, Cleveland, Ohio 44195
    Received 20 August 2009/Accepted 4 November 2009

    Xenotropic murine leukemia virus-related virus (XMRV) is a gammaretrovirus originally identified in a subset of prostate cancer patients. Because androgens stimulate prostate tumors and some retroviruses, we investigated the effects of dihydrotestosterone (DHT) on XMRV transcription and replication. Transcription from the XMRV U3 region was stimulated up to 2-fold by DHT, but only in cells containing a functional androgen receptor. Mutations in the glucocorticoid response element (GRE) of XMRV impaired basal transcription and androgen responsiveness. Furthermore, DHT stimulated XMRV replication 3-fold, whereas androgen inhibitors (casodex and flutamide) suppressed viral growth up to 3-fold. Findings suggest that integration of the XMRV long terminal repeat (LTR) into host DNA could impart androgen stimulation on cellular genes.
  2. Rrrr

    Rrrr Senior Member

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    update from july 13th

    i continue to do better than usual on this med (spironolactone). today i went for a real walk: 15 minutes. unusual for me. i felt like i could even run! (i didn't tho.) then in the p.m. i lifted small wrist weights (4 lbs each) with out feeling like it was taxing. unusual for me.

    and i have not been bedridden in a full week. also unusual for me.

    i don't know if this is all due to the spironolactone or some other variable. there are always at least 5 variables in my life at any given time, things that could be making me better or worse.

    but this improvement seems pretty correlated to the spironolactone.

    i wish someone else would hurry up and try it and see how they do with it!

    i'm now taking 25 mg in the a.m. and that is all.

    rrrr
  3. Jenny

    Jenny Senior Member

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    Thanks for starting this thread rrrr - looks interesting.

    I've got some of this (left over from my husband's ascites treatment when he had liver failure - it's a diuretic) and have been thinking of trying it for a while. But I've just started a trial of sertraline and apparently it reduces the efficacy of some anti-depressants. If and when the sertaline turns out like everything else to do nothing I'll give it a go.

    (It did give my husband gynaecomastia (sp?) swelling of the breasts, but this went away when he stopped it after his liver transplant. )

    Jenny
  4. energyoverload

    energyoverload Senior Member

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    Rrr,

    That's awesome to hear that you're getting some improvement from the spironolactone. Might I ask is it still helping you? (if you're still taking it). It would be interesting to try it. if you're still getting results.

    Jake
  5. Forebearance

    Forebearance Senior Member

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    Hi Rrrr,
    I am sooo happy for you!! That is great news that you are feeling better on this med!

    I don't want to try this treatment approach personally, because I run low in all my hormones, including androgens. But I hope you find someone else to give it a try. It sounds really promising for people whose endocrine systems can handle it.

    Forebearance
  6. Karin

    Karin

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    Some alternative doctors use Spironolactone for kids with autism.

    http://www.icdrc.org/documents/Bradstreet Spironolactone Author Copy.pdf

    Some see great results with it. My son was on it for 6 months. I discontinued because it gave him severe constipation and I did not see any major improvements from it. But I might revisit at some point. I'd also be interested to try it myself at some point. I am on sertraline though, and I see the other poster mention that both drugs can interfere, so I don't know...
  7. Alesh

    Alesh Senior Member

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    In the past I was probably helped by chronic intermittent administration of anabolic androgens. I don't remember precisely the whole loop of the feed back mechanism but simply if your intake of these anabolic steroids is highly supraphysiological your own body's production of testosterone almost halts or substantially diminishes. Then in the meantime when you don't take any androgen you are more or less castrated. Also Finasteride and dutasteride block the receptors that are probably also on the virus.
  8. Rrrr

    Rrrr Senior Member

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    hi jake,

    the day after my 15 min walk, i went on a 20 min walk. and i lifted weights again (5 lbs) and it felt easy to lift the weights.

    today i'm bedridden, but that is likely due to starting allergy shots for molds. i got my first shot yesterday and i feel horrible.

    what confuses me about the spironolactone is that i was on and off it for years due to my polycystic ovaries (PCO). they prescribe it to people with PCO to lessen body hair growth. the confusing part is that i never kept track of when i was on it and when i went off it. i often went off it because i don't like the idea of taking drugs, and i thought, "oh, i'll just let myself get hairier." but then, months or years later, when i saw that next few strands of facial hair pop up i'd freak out and go back on the spironolactone.

    over the years i have had bouts of being sicker and better with my cfs, and i wish i had tracked when that happened in relation to when i was on and off spironolactone.

    i do know that i went off it about 1-2 yrs ago and that correlates with my last down turn of the last 1-2 yrs.

    this all may be a fluke, and i may be sending folks off to try a med that does nothing. so i apologize in advance if i'm doing that. but i do want to see if anyone else gets good results from this. it could be that you have to have MY mix of hormones to make it have a good effect (i.e. too many androgens and too much testoserone -- which i have had for much of my adult life.)

    rrrr
  9. George

    George waitin' fer rabbits

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    Rrrr anything that reduces the replication of the virus gives your body a chance to heal on it's own. Probably if you combined the drug with say an anti-viral or anti-retroviral you would have more consistent results. You know attack on more than one front to give your body the boost it needs to get moving in the right direction. Go Rrrr! Thanks for posting this.

    Man it kills me though that you guys get these doctors to prescribe you medications. My vet. . .er I mean doc won't give me an aspirin without a lecture!
  10. energyoverload

    energyoverload Senior Member

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    Rrrr, how is the med going are you still feeling a fair bit better able to do longer walks/ some weights etc..? I know my doctor would never prescribe this to me, because they'd be like what for etc.. I might try it none the less, obviously depending on your results thus far?

    Jake :D
  11. Rrrr

    Rrrr Senior Member

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    hi all,

    well, since i last posted, i took 3 hits from other outside forces and i was down for hte count (bedridden) a bunch of the time.

    1. i started allergy shots: bedridden 3 days
    2. i drank some well water my body had not experienced before (water others can drink fine!): bedridden 2 days
    3. and... i had to drive 4 hrs total for a new 2 hr doctor's appt. in one day. result: bedridden 2 days after that.

    i feel like i'm doing a bit better today, finally. but let's see what the week to come brings me in terms of improvements. i'll report back in a week or so!
  12. IntuneJune

    IntuneJune Senior Member

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    Rrrr,

    This is very interesting, thank you for sharing. I am excited to follow your progress on spironolactone.

    I restarted allergy shots after being off of them for a few years. The allergist does not want me feeling as bad as you describe....the following day. One arm does get red and itchy after the shot (I get shots in two arms because I have so many allergies). Localized swelling is OK. But if I were bedbound the next day due to the antigens, they would lower the dose a little.

    You have a lot going on at the same time, so it might not be the allergy shot that "shot" you down the next day, however, this might be addressed the next time you are due for another shot.

    I have a lot going on at the same time also. I receive IVIG infusions, that comes into play. I have celiac disease and 99.9% of the time eat food I prepare, but sometimes get "stuck" eating out, so that comes into play, then of course these dreaded diseases/syndromes. The allergist was actually leary of testing me, I told him I needed to tweat EVERYTHING to feel better, and the immunologist gave the OK. He still was leary. Oh, yes, and my thyroid levels were 5 times what they should have been. So trying to sort out what caused what requires a crystal ball. And I don't know about you, but these crystals balls are not what they are cracked up to be.

    We will be following your progress and thank you for sharing.

    June
  13. Rrrr

    Rrrr Senior Member

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    good news!

    i walked a vigorous 20 min today, and did weights (5 lbs). again, it has not been like this for a good 1.5 yrs now.

    what is remarkable is the difference in the FEEL of my muscles. i feel like they are more capable of being used. sounds strange, but that is what it feels like.

    rrrr
  14. Forebearance

    Forebearance Senior Member

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    How great to hear! I hope you keep on feeling better, Rrrr.
    Love, Forebearance
  15. jshu43

    jshu43

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    I take spironolactone for alopecia and it also helps my high blood pressure - which is what I think it is mostly prescribed for. It does help with the alopecia for anyone that needs help in that area. I have not noticed any help with CFS. You need to monitor your kidneys while taking it.
  16. Rrrr

    Rrrr Senior Member

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    i am not sure about it helping cfs either. it SEEMED to help a lot, but yesterday and today, i'm my normal exhausted. but how do i account for the sudden ability to go on walks and lift weights.

    time will tell.

    but i'm exhausted after that 2nd walk. PEM?
  17. Rrrr

    Rrrr Senior Member

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    Medscape - Blood Products Advisory Committee Mulls XMRV Information

    http://www.medscape.com/viewarticle/725820

    "Dr. Silverman told the panel that XMRV is found in semen and that its infectivity is enhanced by androgen and inhibited by antiandrogens."... "XMRV growth is fueled by androgen..."
  18. IntuneJune

    IntuneJune Senior Member

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    Oh, so this is good news.

    You have those days when you can burn the road....... then you have 2-3 days set-back. Hmmm, overdoing it? Since we have been sick so long, and IF the drug is helping, it still might take some time.....

    How wonderful for you to "feel" that you are able to use those muscles. Because of that ability...... there is a good possobility you are using them too much too soon?????? You must feel as though you have been set free!!! The power is back.

    June
  19. Rrrr

    Rrrr Senior Member

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    hi june.

    the last two days were not so "strong" feeling. i am not sure if this med is helping as much as it felt like it was last week. on the other hand, i'm not bedridden!!

    i'll report back soon.

    warmly
    rrrr
  20. Alesh

    Alesh Senior Member

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    During the years of my CFS I tried multifarious medicines and also a drug called amisulpride: In high doses above 200mg it acts as an antipsychotic by an antagonism of some dopamine receptors, in lower doses it should act as an antidepressant by antagonism of presynaptic dopamine autoreceptors. I think I felt better when I used it and now I see it could also have been not only because of the dopaminergic neurotransmission enhancement but also because of hyperprolactinemia this drug causes. I remember that when I used 200mg of amisulpride I had a tenfold increase of prolactin.

    And now I read in Wikipedia: " [prolactin] also decreases normal levels of sex hormones estrogen in women and testosterone in men"

    But also: "Prolactin also stimulates proliferation of oligodendrocyte precursor cells. These cells differentiate into oligodendrocytes, the cells responsible for the formation of myelin coatings on axons in the central nervous system."

    As I understand Wikipedia spironolactone binds to the androgen receptor, so it should bind to the androgen receptors on XMRV and somehow suppress it. But at the same time I read that it is not sure if spironolactone crosses the blood brain barrier. So in case XMRV is hidden in the brain spironolactone is probably ineffective.

    I would consider the use of finasteride or dutasteride also.

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