Kuvan Trial

Kuvan Trial

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Kuvan Trial


October 3, 2010 in Uncategorized

I have been on a trial for Kuvan since mid-September. I have averaged a Phe level of 14.7 with readings in the mid-14 range, the mid-11 range and then 18.7 just before I began the trial. After being on Kuvan for 48 or 72 hours (I don't recall which is accurate) I had a Phe level of 8.5. A few days later I had a Phe level of 8.8. My last Phe level was 6.5. That was the lowest I ever remember having! When I was a child they would shoot for a Phe level of between 8-10. Now the normal range is considered 2-4. I believe I can accomplish this with Kuvan. My Nutritionist, Belkys, thinks this is a good goal for me and that with the Kuvan, and some minor diet adjustments, I may be able to hit that goal and maintain it. As a side note, I go to the lab weekly for now to get blood drawn for my Phe levels because I cannot do a finger stick. I prefer the needle in the arm and a 1 hour trip to my clinic. I know I am a bit odd. :)>+ PKU has helped to make me who I am. Maybe I should not see it as an enemy, but as a challenge. Any parents of PKUers- I suggest you help them to see it as a challenge, not a disability.

7 Reviews of Kuvan Trial

  1. Registered: Dec 6, 2009

    Posts: 0

    Thessaloniki, INTERNATIONAL


  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I am glad to hear Kuvan is working for you and keeping you determined with staying on diet!

  3. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Thank you for your words. As parents, we want to hear what PKU adults have to say. I am glad Kuvan is working for you. I think it is an excellent idea to see it as a challenge. Keep working hard! Stephanie

  4. Registered: Oct 31, 2006

    Posts: 0

    Taylor, Michigan

    my name is bj and i have higher levles as well but all that my doc’s want to do is wait wait wait and i don’t understand it . i would like to keep in contact with you about kuvan please email me some time at
    no1bowler102588@yahoo.com thank you bj

  5. Registered: May 27, 2009

    Posts: 0

    , Florida

    Hi BJ,

    My levels came way down with the Kuvan- my last one was 3.2! They formed an average of my levels and then tried the Kuvan on a month long trial. After the month I was told how the levels went during the trial. It went from 18.7 the day before the trial to my current 3.2. The diabetes is something I do not have to deal with and I do not know how that would effect the Kuvan.

  6. Registered: May 4, 2009

    Posts: 0

    Orlando, Florida

    I’m Sindy and i tryed a strict diet, but it didn’t work. It’s so hard. Now I starting Kuvan again. That make it easier. And bring my phe level down.

  7. Registered: May 27, 2009

    Posts: 0

    , Florida

    Hi Sindy, I have a friend named Cindy Brown & saw your user name and thought you were her for a sec!

    Kuvan & diet seem to work well together for me thus far. I am going to try Better Milk tomorrow to see how that tastes. If I like it I may try to get it through my insurance plan (that might be a fight though).

    Keep me posted on how things are going for you! I really want to blog here more, but it is difficult on my iPhone.

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