Viewing 15 posts - 1 through 15 (of 26 total)
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  • #6094
    Avatar of Gerard
    Gerard77
    Member

    Hi,
    I am trying to find information on a product called Kuvan – which has been created by BioMarin.
    I have emailed the company and as yet received no response from them on it.
    I am 29yo with PKU and would like to find out more information on this as I would like to know if it will be of benefit to me.
    Does anyone here know of anything on this product?
    Gerard

    #7738
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Gerard, nFirst contact your Dr.,and he can tell you if Kuvan would even benfit you by what type mutation you have.
    I have contacted Biomarin they are located in San Fransico,Ca.
    Here is there Phone # 415-506-6700 nFax #415-382-7889 nThey will need your Drs. Approval along with Written perscription. nThen Biomarin will send you a form via Fedex,sign it fax back,and you get your pills following week.(depending on your location)
    I hope i was helpful for you. nGood Luck!!!!
    I start mine next week..
    Take Care, nTracie-PKU

    #7982
    Avatar of r
    Onazzur
    Member

    Kuvan is AMAZING. It changed my life. I eat anything, and I mean anything, I want to eat and I don’t have any formula anymore, just the Kuvan. Also, my levels are always anywhere from 2-3.
    Not everyone responds to it but I strongly recommend trying it.
    -Bianca

    #8007
    Avatar of Tracie
    Tracie_PKU
    Member

    Just wanted to let you know that i have responded to Kuvan wonderfully.
    I take only 4 pills a day,and started in Nov. My PHE then was 16.9.Now it is 9.something.
    I am still a strong vegan.I think probably cause i don’t care for any type of meat,poultry,and fish products.
    Plus no more formula that alone is a blessing.
    I hope anyone who trys Kuvan has a good response to it.

    #8010
    Avatar of Nick
    arkham
    Member

    You might want to look at this: http://www.kuvan.com/AboutKuvan/AboutKuvan.aspx Briefly, Kuvan is a synthetic form of BH4 (tetrahydrobiopterin), a cofactor which assists in the breaking down of phenylalanine by the enzyme phenylhydroxylase (PAH). People with PKU have reduced production of PAH. Because of how Kuvan works, those with the most residual enzyme activity (meaning that they produce more PAH and have some ability to break down phe) are the most likely to respond well to Kuvan. Generally, those with less severe forms of PKU respond better, though there are those with classic PKU that also respond. In my case, I have moderate, or variant, PKU (vPKU), and have some residual enzyme activity. I currently take 19 pills a day (dosage is based on weight) and 1 1/2 servings of formula and eat 45 grams of protein in food each day. My levels have been at around 6 on this regimen.

    #8025
    Avatar of Caroline
    cmbell
    Member

    Anybody know anything about taking Kuvan during pregnancy???? Thanks.

    #8152
    Avatar of Rebecca
    pkusince62
    Member

    Dr. Koch contacted me last week about Kuvan. He felt it would probably be good for me to give it a try. So I will be starting a 30-day trial here soon.

    #8159
    Avatar of Katie
    katiemag16
    Participant

    best of luck on Kuvan!!!!

    CMBELL – they highly recommend right now you not take Kuvan during pregnancy because there is no research to determine if or what the effects would be on the baby.

    #8162
    Avatar of Andolyn
    btterflygal
    Member

    starting kuvan on Monday.. not sure what to expect.. it seems i will have to be quite organized at first especially

    i am not the best with that but i will try . :)

    #8163
    Avatar of Breanna
    BreaMarie91
    Member

    Good luck btterflygal with Kuvan! You will have to let us know how everything turns out for you!

    #8164
    Avatar of Andolyn
    btterflygal
    Member

    Thanks Brea   I  am also known as Andi :) 

    #8170
    Avatar of donna
    catcocoa
    Member

    This is for brea how do you accept people that want to become your friend I tried every thing and nothen. Can you help me if you know how.
    Thank you.
    Catcocoa.

    #8172
    Avatar of Breanna
    BreaMarie91
    Member

    Try clicking on the name of the person who you want to become a friend to. That should take you to their profile page. Somewhere under their picture on the left side of the screen there should be some links that you can click on. One of them should say Add To My Friends. Click on that link, and it should work. Then you just have to wait for the person to accept your friend request.

    Let me know if this does not work!

    ~Breanna 18 CPKU

    #8176
    Avatar of donna
    catcocoa
    Member

    Hi brea I tried whet you told me to do and it didn't work!!I don't have a regular computer I use my blackberry cell phone do I need to use a laptop or something please help me I don't know whet to do? I'm getting upset.”PLEASE HELP”
    Your friend.
    Catcocoa.

    #8177
    Avatar of donna
    catcocoa
    Member

    Hi brea I tried whet you told me to do and it didn't work!!I don't have a regular computer I use my blackberry cell phone do I need to use a laptop or something please help me I don't know whet to do? I'm getting upset.”PLEASE HELP”
    Your friend.
    Catcocoa.

Viewing 15 posts - 1 through 15 (of 26 total)
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