Viewing 6 posts - 1 through 6 (of 6 total)
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  • #6545
    Avatar of Kathleen
    Kathleen
    Member

    Is anyone on this site using PreKunil, or have you had the chance to use PreKunil, or have you worked with Dr Koch doing clinical research with PreKunil, or do you know about PreKunil’s availability?
    I desperately want to be on this because I don’t really see myself going back to lo-pro bread and spaghetti, as I am really accustomed to the regular stuff by now. I find the lo-pro stuff pretty unpalatable.
    My doctors seem reluctant to talk about it. Is this because the state won’t cover the cost? Does anyone have ANY current info on this drug?

    #6549
    Avatar of Breanna
    BreaMarie91
    Member

    If I’m correct I think PreKUnil is the same as Kuvan (anybody correct me if I’m wrong). If it is, then it is still being researched. I know because I am in a Kuvan study and I’m starting the pills tomorrow. nBre

    #6555
    Avatar of Kathleen
    Kathleen
    Member

    Okay, new question. Has anyone on here even HEARD of PreKUnil? I’m curious because it seems that not many people have. The reason this may be is because it is really something for people like me, who are older and don’t think that they can stick to the diet. Also, it cannot be used if you ever plan to get pregnant. (which I do NOT)
    What PreKunil does is keep the effects of higher phe levels from damaging your brain, but it does NOT lower phe levels in the blood. Which is why it would still be damaging to an unborn child.
    This is something that males with PKU should look into, and also females with no plans of ever having kids.

    #6576
    Avatar of ANGELA
    cleobaby
    Member

    what a rip. pku guys get all the perks. ill mention it to my brother though thanx. he’s terrible at the diet.

    #6577
    Avatar of ANGELA
    cleobaby
    Member

    what a rip. pku guys get all the perks. ill mention it to my brother though thanx. he’s terrible at the diet.

    #6586
    Avatar of Kathleen
    Kathleen
    Member

    Oh, you can use it as a female as long as you know that you won’t be getting pregnant within the year or anything, and you have to actively be on birth control, or even a couple of kinds of birth control. I am totally okay with that. I think having kids is just a weird process anyway, add maternal PKU and birth defect risks into that and I PERSONALLY (I’m not speaking for anyone else) don’t think that the result (child/baby) is worth the trouble. I know that may seem really cold and mean, but hey, at least I know that now and I am taking the steps to avoid bringing a unwanted, disabled child into the world.

Viewing 6 posts - 1 through 6 (of 6 total)
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