PKU.com Community Discussion Forum Generation PKU Big Sixty ^ v ^

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  • #9105
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    Anonymous

    Hello!
    My doctor has been very cautious when discussing Kuvan for the past couple of years. She knew that it doesn't work for everyone, and she knew that if it did work for me it would be very expensive. She didn't want me to try it and have it work if I wasn't going to be able to afford it. But at Metabolic Camp this past summer, a friend's mom informed me that insurance would probably cover it!
    So here I am… starting a three-day diet record today and starting the 60 day trial on Sunday. I'm really excited to see what happens, but I am a little nervous about being very exact and consistent to make sure I get in all 200g of my formula and less than or equal to 325mg of phe per day. I'm usually pretty good about this, but college life kind of puts stress on the situation because I have a class that lasts through lunch time and I commute, so I sometimes miss lunch.
    I have occasionally seen dramatic changes in phe tolerance of people with Classical PKU because of Kuvan: having tofu, cheese, and even chicken introduced into their diets because they needed it! I know this kind of response is not typical, so I'm trying not to get my hopes up too high just yet.
    I have heard that if you are a non-responder, you may be able to get enzyme shots in order to increase your phe tolerance… Has anybody ever had these or know something about them?
    My dietitian was very careful to inform me that Kuvan is not for being able to eat more phe; she said it was to lower blood levels… It would definitely be nice to be able to eat more phe, but I would be satisfied to be able to lower my blood levels more easily.
    People who have taken Kuvan, are on Kuvan, are considering Kuvan, have no idea what Kuvan is, or just want to say hi, are more than welcome to respond! I need all the help I can get!
    Thanks to all of you courageous souls who braved this freakishly long forum topic!

    #9128
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    Anonymous

    Well, my second level was put in the mail and picked up by the mail-person. The mail-person took it to somebody's house and put it in their mailbox! By the time the person who had it got it to me and I got it sent in, it had been ruined from sitting in the mailbox in the Alabama sun all day. So now I have to add another week to the sixty days… that one didn't count….. how frustrating.    

    Has this ever happened to anyone else?

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