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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. Hope123

    Hope123 Senior Member

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    Yes, I agree with the monitoring. People on spironolactone, especially when starting out, need to get blood tests to monitor their kidney function and electrolytes. Also, low blood pressure (careful in people with OI) need to be monitored. I would advise against starting it with no medical supervision.
  2. Alesh

    Alesh Senior Member

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    Today I started with 0.5 mg of finasteride but I don't expect any miracle.
  3. Alesh

    Alesh Senior Member

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    I was so sick from finasteride that I stopped to take it.
  4. Rrrr

    Rrrr Senior Member

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    i'm so sorry you got so sick! i am not sure what finasteride is, but i'm sorry you got sick!!

    i'm still on spironolactone, and tho i'm not "cured" i'm doing better than usual in terms of stamina.
  5. Alesh

    Alesh Senior Member

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    Finasteride is an antiandrogen that men often take against hair loss or prostate hyperplasia and other problems. Perhaps it means something that I was so sick from it. I would like to try it again but my wife is strongly against it. ;)
  6. Rrrr

    Rrrr Senior Member

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    speaking of hair loss, my hair is coming out more lately, but not sure if it is related to taking the spironolactone or not.
  7. hensue

    hensue Senior Member

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    Hey Rrrr
    I am in a predicament maybe great minds out there can help. I am on avalide blood pressure med with diuretic, I think? My hair is also coming out which is a side effect. I take wellbutrin sr 150mg once a day and avalide the lowest dose. I tried cutting the avalide in half and OMG I had so much energy it was unreal. Not losing so much hair either. My body did not adjust well I went back to 3/4 of the pill. I started hurting like crazy until i went back on the 3/4 of pill. How do explain it? Feels like my body stops, my back hurts cannot go....bm I take a laxative. My head was killing me and the pain was overwhelming all over my body. Now I have fibromyalgia but I broke down crying and took 1/2 of pill yesterday and 1/2 of pill last night.
    Talk about quit hurting my head immediatley quit and the body ache soon quit in the following hours. I have been experimenting like this for up to two weeks down to 1/2 of lowest dosage.

    I figured out now one reason I am so fatigued is taking the avalide every morning. I had taken my blood pressure on the half dose and it was lower than usual on the avalide whole dose???
    I think I am going to start biotin for the hair loss. See how that works my hair lady has graves disease. She said it takes about 6 weeks for the biotin to help your hair.

    This is what I was doing one 150 mg wellbutrin sr twice a day then I changed it to once in the morning. So I started lowering my avalide???
    What is a girl to do???
    I tried norvasc and extreme swelliing in Kankles. lol

    Any suggestions??? I have heard about the diuretic loop is avalide in that group?? need the med but very fatigued taking it. Pain from H...without it.
  8. hensue

    hensue Senior Member

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    RRR
    reason I posted this was I was on spironolactone before going on avalide. I think isnt it a diuretic? Or am I confused?? Imagine that!
  9. Rrrr

    Rrrr Senior Member

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    hensue,

    i know nothing about that med, so i just can't make any suggestions. you take it to reduce high blood pressure? isn't there another med you can try for that if it makes you so fatigued?

    anyway, i'm soooo not able to offer any thoughts. sorry.

    yes, spironolactone is a diuretic. i see it is also used to help treat high blood pressure. so maybe you can try switching to that? but i'm no doctor and have no idea, just speculating here.

    biotin helps hair loss? good to know!

    i
  10. taniaaust1

    taniaaust1 Senior Member

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    rrr. I have your androgen experiement going on in reverse. My testosterone level came back saying zero.. so my gynocologist today put in a testosterone implant under my skin. So lets see if i get sick from viral replication of increased testosterone. (if i wasnt getting severe symptoms my gyno thinks are being caused by no testosterone, there is no way i would be trying the implant)
  11. Rrrr

    Rrrr Senior Member

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    please, please taniaaust, please re-read this thread and the other one that deals with anti-androgens. there are 2-3 people who got MUCH MUCH WORSE and never recovered from being given testosterone.

    best,
    rrrr
  12. Rrrr

    Rrrr Senior Member

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  13. mars2001

    mars2001

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    sprionolatctone helped me also

    hi, i have had chronic fatigue syndrome for 17 years, and i just started using spironolactone 50 mg twice a day , based on this thread, and i almost immediately felt the difference. i had used this medicine previously for hirsutism, and i am glad i started it again. thanks so much for your info, it has made a world of difference !!! other things that have helped me are armour thyroid and isocort for adrenal fatigue....hope this also helps someone out there....regards,,, marsha
  14. taniaaust1

    taniaaust1 Senior Member

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    Right now im quite upset about the testosterone implant i got yesterday... too worried that i may have the virus and that this could make the CFS/ME worst. Im upset to the point that right now im thinking about cutting the thing back out. My wound from where it got put in may be still open.. maybe i can squeeze it out. :( :( i dont know what to do as there isnt enough info about anything anywhere.. but no way do i want to risk becoming worst again. Ive been very very bad with the CFS/ME in the past and cant bear the thought of ending up back there.

    i feel sick with stress right now. I would get it out of my body this very moment if my situation wasnt so desperate. My extreme PMS is so bad that im in deep trouble with the law due to it and could go to jail again all over my mood swings (im currently going throu court due to it)... this testosterone.. my specialist thinks may help those mood swings. So its a case of leave it in and it may help me and stop me ending up in jail due to uncontrollable PMS and the things i end up doing while in that state, (the other option my Gyno gave is to have a hysterectomy.. but one day i hope to be well and be able to have a happy family). ... or possibly end up with severe side effects of testerone..and possibly end up completely bed ridden and needing to be cared for again. i dont nowdays have anyone living with me to care for me so if i got that bad again with the CFS/ME, i'd end up in a home :( :(

    (feeling very disturbed over the situation.. whatever decision i take may have dire consquences).
  15. taniaaust1

    taniaaust1 Senior Member

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    :( trying to stay calm but im crying now and completely freaked out about it all. I'd rather be dead then have severe CFS/ME again and be spending everyday in bed unable to get up in a room which ends up being like a jail cell cause only thing able to do is look at the same walls day after day. i cant bear to have that degree of physical pain again.. and be laying there possibly close to dying with no help at all. I cant bear the thought that this may end up taking me back to where i was with the CFS/ME in the past.

    im trying so hard not to get a knife to myself right now to get the implant out. My partner (who dont and cant live with me as he's married), has on phone told me to hold on.. that we will try to sort it out with specialist tomorrow. But im scared to talk to specialist as when i tried to mention about XMRV, i got shut up.. she wasnt willing to listen to any fears i had and went ahead and did the implant.
  16. taniaaust1

    taniaaust1 Senior Member

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    :( trying to remove the implant now.. taken its bloodied pad off. my wound is still gaping some from it, apparently she never stitched it after putting implant in. This implant thou isnt just under the skin :( :( it appears to have been placed so deep that i cant even right now find it. (squeezing the wound isnt getting the thing out, i cant even feel where in there it is :( :( it seems to be have been put deep in my body).. Hurting trying to find it.. :( :( i hate having CFS/ME and the stress it puts on us, not ever knowing if we are doing the right things or not.

    I NEED to get this implant out.. I NEED more info on XMRV before i feel comfortable with having this... (crap.. i can feel myself going into an emotional meltdown due to my fear over getting worst CFS/ME again)
  17. Rrrr

    Rrrr Senior Member

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    taniaaust1,

    i am not a doctor, so please take my "advice" with a grain of salt, and know that this is what i would do. I would not try to take out the implant myself. too dangerous. I would just call the specialist tomorrow and ask for an emergency appointment for that day or the next day. I would tell them I had not understood they were going to implant something in me and I am just not comfortable with that. I'd tell them I know too many people online who have my same illness (ME/CFS) and who got worse on testosterone.

    It is yr right to take it out. it was wrong of them to put it in without telling you that is waht they were going to do.

    for the bad PMS, I'd try Wild Mexican Yam extract. It is a cream/gel that has helped a few friends of mine who have bad PMS. this is what they used
    http://www.drugstore.com/qxp81313_333181_sespider/born_again/wild_yam_cream.htm

    Again, I am not a doctor. I am just offering my thoughts, but please do not take my thoughts as medical advice.

    p.s. there is a lot on line about wild mexican yam extract. i just googled it and found a ton of websites. this is just one. i did not read this website, so i do not know if it is any good or not
    http://stason.org/articles/wellbeing/health/Wild-Yam-The-Natural-Herb-for-Menopause-and-PMS.html
  18. IntuneJune

    IntuneJune Senior Member

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    taniaaust1,

    How are you this morning?

    June
  19. IntuneJune

    IntuneJune Senior Member

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    Rrrr

    How are you doing on the spironalactone? I am asking for your latest update because this afternoon, I have an appt with the primary doctor who.... on last appt... stated "we might try a diuretic, Lasix" to help with the swelling I am experiencing. So...if he is going to go that route, I will ask about spironalactone.

    This is a new PCP, only a year, and I do not have the comfort I had with my former, now retired, PCP, nor does the new guy TRUST me as the former doctor did.

    I am extremely conservative with medications, having been at this for over 30 years and having been tried on multiple drugs by the rheumatologist and not having success with them but left with a side-effect. So, I am ultra conservative.

    This new guy probably thinks the OPPOSITE. I mentioned B12 in the methylcobalamin form and he lectured for a minute about "not spending millions of dollars" on the stuff which has no studies, etc.

    I countered...... well, that's another story.

    I look forward to your update.

    June
  20. Alesh

    Alesh Senior Member

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    I was quite well on supraphysiological doses of testosterone and other androgens. Patients with HIV are given anabolic steroids to improve their immune system. The only thing I would be afraid of is the method of administration: I would prefer oral tablets of testosterone or of any drug over implants or depot injections-if you see that you start to feel sick from it you can easily stop it.

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