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Dilemma between Spironolactone or stopping all hormones

Discussion in 'Women's General Hair Loss Discussions' started by mellie, Jun 8, 2017.

  1. mellie

    mellie Established Member

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    Hi ladies,

    I've been on this forum for a while now reading everyone's stories and trying to figure out my way through this horrible thing that is hair loss. I'm getting close to the 2 year "anniversary" of when it started for me and for the past 2 years my life has been miserable. I don't sleep well, I'm obsessed with it, I feel self conscious, ugly, I haven't had a serious relationship since I broke up with my ex (pre-hair loss). The whole reason for going off the birth control pill was to freeze my eggs. These dreams of having children are kind of long gone now.

    There is MPB on the male side of my family and basically I was told my bcp-induced TE accelerated the onset of my Androgenetic Alopecia. After a year of non-stop shedding, I started using Rogaine and it definitely helped stop the shedding. I still shed more than normal but it's not as dramatic as it used to be.

    I've now been on Rogaine for a year with some minor regrowth and I'm still very depressed about my hair. At this stage, I'm considering 2 options: 1) add Spironolactone to my regimen of bcp + Rogaine or 2) stay on Rogaine but ween off the bcp (forever)

    I found a few accounts of women who regrew all their hair on the bcp/Rogaine/Spironolactone combo so it's very tempting to give Spironolactone a try. If it doesn't work, at least I will be able to say that I tried everything. That said, I don't love the idea of taking more drugs and to have to stay on this cocktail forever, with some known side effects.

    The other solution is to actually go off the pill and see if my body will naturally heal itself (I am also seeing a naturopath). I've been on the pill since age 21 so it would be nice to have a real cycle and feel like a normal woman again. But... it could also not work and at that point, I would probably start looking at hair pieces because I'm tired of feeling ugly and want to feel beautiful again.

    I've been thinking about this for a long time but I can't make up my mind so I'm looking for advice based on your own experience. If anyone had a positive experience on Spironolactone or a positive experience going off the bcp, let me know! I feel stuck.

    Thanks,
    M
     
  2. nitu1

    nitu1 Member

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    Hi Mellie
    I have never tried BCP. I started Rogaine in sept 2016 and it literally stopped/brought my shed to nothing but as of recent in April 2017 my shed has picked up, probably still less than before starting rogaine but i miss the no shed time frame where i didnt worry about the hair. I have not started the Spironolactone as the derm wanted to wait since rogaine was helping. In any event, sorry i am not much help. I would check with your derm to see if its worth adding it or wait and add a little later.
    Good Luck
    N
     
  3. mellie

    mellie Established Member

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    Anyone else? Also, will Spironolactone cause a dread shed even on Rogaine?
     
  4. eggplant

    eggplant Established Member

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    Spironolactone's been around for a while: it's pretty safe. I've taken it since I was a teenager because prior to the hair loss I was diagnosed with an excess androgen condition. Never had any major problems with it. My only complaint is that since going up to the max dose of 200 mg/daily I suspect it causes some minor nausea. Can't say it has really helped with the hair loss but it does seem to help a lot of others and it has almost completely annihilated my acne.
     
  5. LosingHope

    LosingHope New Member

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    I can say that if I could do it over, I would have never stopped the BCP even tho like you they caused this whole problem. I was on Ortho Cyclen and Spironolactone and quit the BCP and lost SO MUCH hair. I've gone back on BCP to try and grow some back and upped Spironolactone and wish I never stopped it in the first place.

    Just some words from someone who feels so disgusted and blames them self for all this crap. :(
     
  6. Maasai

    Maasai Member

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    I feel the same way! Although I was thinning a little while on BCP it got way worse after I got off of it. Ugh, I'm still deciding on what my next steps are - rogaine, Spironolactone or BCP or all of the above. Plus I can't see a dermatologist until October.
     
  7. mellie

    mellie Established Member

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    How much Spironolactone were you on?

    It's possible that just the act of stopping the BCP triggered your TE which led to Androgenetic Alopecia, just like me.

    Or are you saying that you quit the BCP twice?

    - - - Updated - - -

    If I could do it all over, I would have weened off the BCP. I had no idea that stopping could ever cause hair loss. I don't want to be stuck with it for the rest of my life but I feel trapped at the moment and want to do whatever will give me the best chance to keep my hair and possibly grow it back.

    I might consider topical Spironolactone to avoid the side effects but not sure on the whole thing yet. Hair loss is really a curse!
     
  8. LosingHope

    LosingHope New Member

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    So the longer story is I had stopped BCP in 2013 with only a crazy breakout that led to taking 50mg Spironolactone for 2 years without any hair issues. I added in Ortho Cyclen in feb of 2015 and 4 months later I had a TE that I think triggered Androgenetic Alopecia. Hair was just getting thinner on top. So in June of '16 I went to a new Dr that told me to quit Spironolactone and that I didn't need it so I did and 3months later you could see my scalp. Then they said we'll if it's the BCP you think caused it, quit that so went back on 100 Spironolactone and have continued to lose hair since. At 150 Spironolactone now and just decided I need to beat this so started Apri (Desogen) last week.

    Tired of feeling ugly. Not myself. Black clouds from this really dampen things. Now I just wear hats to hide the ugly when it used to be my best feature.
     
  9. mellie

    mellie Established Member

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    LosingHope, I'm so sorry you are experiencing this too. It sounds like we have very similar stories... Today I'm having a particular bad day, my shed has been higher lately (could be the annual Rogaine shed or just a seasonal shed) and I went shopping for clothes and could see the top of my head in the dressing room mirror (worst thing ever). This is still also all so surreal for me. I never had hair issues before!

    Desogen is the pill I'm on. Never had issues with it, except that this time around I hav breakthrough bleeding almost every month when it was never the case before. If you're going to stick to Spironolactone, you need to make your way up to 200 mg per day, that's the reco from all derms...

    I had pretty much made up my mind that I was going to try Spironolactone but now I just read more horror stories of women gaining weight in the butt/thigh/tummy area and it not coming off even after stopping. I don't think I could ever forgive myself if that happened to me so I'm back to square one. There's got to be an explanation as to why it works for some women, why it doesn't for others and why some lose weight when other gain weight. I'm also worried about recusing testosterone to zero and losing muscle mass as I enjoy working out.

    such a dilemma... I'm curious to see what your labs were for hormones. Feel free to pm me if you want to talk more in private

    m
     
  10. eggplant

    eggplant Established Member

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    Echoing mellie: If you tolerate the 150 then you may as well go up to 200.
     
  11. pasbrillantebrunette

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    In my opinion, you should definitely try spironolactone if you have no counter indication. It's better to act against the hair loss. Give it a try for 4 to 6 months and be sure you are followed by a derm and do regular blood work check (just to be sure).
    Personnally, I tried Spironolactone, but also CPA and Diane... It all gave me too much weight to keep taking it, whoich I am very sad about because it was working for my hair. Most girls do good on spironolactone. If you have the opportunity to have a functionnal mostly safe treatment, take it. What I know is that I would, if I could !

    Good luck
     
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  12. mellie

    mellie Established Member

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    How much weight did you gain?
     
  13. pasbrillantebrunette

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    I am not sure. I refuse to weight myself. But I definetely swallen, gained on tammy, tights, back and harms! It's like water retention and don't go away for now (I have stopped the meds 2,5 months ago). I think it is because my blood circulation is not idealso I am diposed to water retention but at the same time, Spironolactone is supposed to be a diuretic... so I am not sure if it's water or not. I have always been slim, but since I tried to do something for my hair, it's been a journey : Diane gave me 7 kg, I stopped and lost 4 or 5, then Spironolactone gave me some more and this time it does not go away that easily. I might have hormonal imbalance, oestrogenes dominancy... not sure.
    Anyway, the fact is we all react differently to Alopecia Areata, and with some luck (and mostly without my bad luck), you will do good on Spironolactone and get some hair back in addition to maintain what you have.
    For now, I don't really know what to do... go dutasteride route... I'd rather lose the weight before starting anything new, in case it happens again... but in the meantime, hair are falling.
     
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  14. pasbrillantebrunette

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    Not to Alopecia areata but to AntiAndrogens...
     
  15. mcat11

    mcat11 Established Member

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    Try finasteride at 5 mg.
     
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