Community Discussion Forum Adults and PKU Kuvan,and My PHE Level

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #7991
    Avatar of Tracie

    Hi Everyone,
    I just wanted to share that i have been on Kuvan since Nov 08.I got my first PHE level back and it was 16.9.So we waited a bit to do my second level,and my levels were 9.6.
    My body needed to get Kuvan flowing through regularly.
    I am only on 4 pills a day,and no side effects.
    I do not have to take my formula anymore.(Thank God)I was on Phenex-2.
    I do understand that each person is different on the response so i was very anxious on what it was going to be.
    All i can say ITS DEFINITLY WORTH A TRY.
    Thanks for listening. nTracie-PKU

    Avatar of Nick

    4 pills a day? wow. I’m on 19 a day…I know that dosage is based on weight, but…4? My levels have gone from around 12 to…well, at my current intake of dietary phe, 6, though it can be lower if I lower my phe intake. Still have to take formula, though, but down from 3 scoops a day to 1 1/2. Good for you that your levels have improved so much and that it’s allowed you to stop formula.

    Avatar of Tracie

    Yes i am very fortunate. nDr. Koch says its because of a rare gene mutation i got off of both my parents(Thanks Mom and Dad).LOL
    I was on 5 pills a day,but experienced heartburn so Dr. Koch told me to cut 1 back,and lets see what happens.
    I still don’t eat any high protein or any kind of meat,Chicken,fish etc.
    I am a pretty strict Vegan,but as i get older i actually enjoy it.
    Thanks for the compliment on my levels it feels great finally feeling like i have control nagain!

    Avatar of JONAH

    hello to you all, i want to thank tracie, and rach08 for getting on my friends list and ni still have no clue what i am doing here i just figure out how to talk to you all ? i guess i am use to like instant messenger where you type and talk at the same time.
    like i said i have been off my diet since i was 5 years old and i am now 42 tracie i really like you to email me i like to talk to you about having a child i have no kids of my own i guess i never will ??? only god know if i will or not i am just courious ok sorry you all this is not a topic it the only way i know how to talk to you all i don’t know much about a computer your friend J.Reed

    Avatar of Tracie

    HI JonaHreed,
    I would love to talk with you ,and children.It is totally possible to have a healthy child,and be PKU. nAny advice i can give you i will definitly do that.
    Never give up sweetie.My Hubby and I are actually thinking of another,and i’m gonna be 40 in July.(OUCH!)LOL
    I am also on facebook!Do u have it?Its free to join,and its lots of fun.
    I’ll be waiting to hear from you soon.
    Friends, nTracie-PKU

    Avatar of Caroline

    What about Kuvan and pregnancy? How does that work? Do they know yet?

    Avatar of Tracie

    I was told to continue the Kuvan,and u will take a smaal amount of a supplement. nUnfortunatly Kuvan doesn’t give u all the nutrients needed when carrying a child.
    Talk with ur Dietition.There is alot of different things to try.ALOT

    Avatar of donna

    Hi this is catcocoa has anyone exprance side affects from taking kuvan? I get head acks off and on also stomach pain.for the first time I been getting lower neck pain and shudder pain. I take 19 pills a day and 100 mg.I'm thinking not taking my pills this afternoon and stop takeing kuvan all together. Can anyone help me.



Viewing 8 posts - 1 through 8 (of 8 total)
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