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Thread: Has anyone ever heard?

  1. #61
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    Interesting about the mouth sores, as people keep mentioning the hair loss here. I'm sorry it isn't working well for you..... everyone is different, I guess. I still notice some hair in the shower but not nearly as much as I did while on CTX. I wonder if a larger dose of the folic acid would be feasible or make a difference. If you are being treated at John's Hopkins, I'm pretty sure you are in good hands. I'm sorry about the loss of your sister, and probably said so when you first joined, but my memory is not that great. I think some others will chime in about the folic acid, as they always have before!
    Anne, dx'ed April 2011

  2. #62
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    Rituxin and prednisone and noting hair really falling out. Folic acid and biotin suggested to me - see RA this week and will check with him

  3. #63
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    Doc tripled my folic acid dose & the falling hair ceased...it even came back in curly for a while!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  4. #64
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    Quote Originally Posted by Dirty Don View Post
    Doc tripled my folic acid dose & the falling hair ceased...it even came back in curly for a while!
    Does that mean if we are follicly challenged that we might grow some hair on our barren heads?
    Knowledge is power! Wisdom is using it to make good decisions!

  5. #65
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    Quote Originally Posted by drz View Post
    Does that mean if we are follicly challenged that we might grow some hair on our barren heads?
    That's a real groaner!!! Lol
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  6. #66
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    Don, I wasn't sure if there'd be any danger in upping the dose that much. For me that would be 3,000mcg of folic acid a day. But if your doc said so and you did it and got thick, curly hair, then, OK! I might try at least doubling it. I'm not too happy with my thin hair compared to how it used to be. I used to wear my hair in two braids, now I get one braid the same thickness as each of the two braids was, or less!
    Last edited by annekat; 03-09-2016 at 05:16 AM.
    Anne, dx'ed April 2011

  7. #67
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    Anne, folic is a vitamin, not a drug. Like most vitamins, the excess would simply 'roll off' the body. That's one reason docs don't really care about vitamins that much...they dilute quickly in the body. It did work, I was amazed! Curly hair? Really? I'm Spanish/Indian...we don't HAVE curly hair!!! LOL
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  8. #68
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    Quote Originally Posted by Dirty Don View Post
    Anne, folic is a vitamin, not a drug. Like most vitamins, the excess would simply 'roll off' the body. That's one reason docs don't really care about vitamins that much...they dilute quickly in the body. It did work, I was amazed! Curly hair? Really? I'm Spanish/Indian...we don't HAVE curly hair!!! LOL
    Thanks, Don, and I just corrected my post above, it is not mg, it is mcg. I think I will start taking some extra and see what happens. I already have fairly curly hair, so I don't really need that part...but I'll take it if it enhances the curl in a nice way.....
    Anne, dx'ed April 2011

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