PKU.com Community Discussion Forum What’s the Phe? PHE block pill

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  • #6163
    Avatar of Meaghan
    mayrogers13
    Member

    Okay so personally I would never use it, I am too afraid to. but I have a question. Have any of your doctors explained to you what heppens to the phe in your body? I met with my dietitian today and she sad that the pill blocks the ability for the phe to get into the brain but it still in your body. Has anyone explained where it is stored?

    #6164
    Avatar of Breanna
    BreaMarie91
    Member

    I don’t have an answer to your question. I just wanted to say I agree with you, even if my doctor or dietitian ask me if I want to try the Phe block pill…I know I wouldn’t want to try it.

    #6218
    Avatar of Andolyn
    _ilou
    Member

    I am on the phe bloc.. i was told the phe does stay in the blood
    but is blocked in the brain by these pills. What goes there to the brain is tyrosine and tryptophan. I have been trying it for about two months .. not sure how to do it and not sure if i will do it for long.
    To be honest i really wanted to do it to save on food bills
    that low pro food is high !
    my levels were always good before this time well ok mostly good .
    Andolyn

    #6227
    Avatar of Breanna
    BreaMarie91
    Member

    Andolyn,
    I was just wondering, has the pill been working for you? Also when you first started taking it did your doctor need to take your blood alot? The reason I’m asking is because (even though I said I wouldn’t do this) I have been asked to join a study with the pill Kuvan and I really don’t know if I want to do it. Part of me does because I’m curious and for various other reasons, but then part of me doesn’t because I’m afraid to and I don’t want to experiment with myself. But the main reason is because I don’t do good with needles AT ALL and if I join the study it would mean more blood tests. nBreanna 16 CPKU

    #6788
    Avatar of Chris
    niceguy
    Member

    Speeking of pills if you have read the winter news letter they where talking about that (BH4) pill. Well when I got home that day from school I got an E-mail from my DR. she asked me if I wanted to be one of the people to test the pill. and I said yes but instead of helping it made my phe levels (Went to went to the moon). As my DR. said so now I’m back on lanaflex and doing better.!

Viewing 5 posts - 1 through 5 (of 5 total)
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