Starting Kuvan

Starting Kuvan

Avatar of victoria

Starting Kuvan

April 8, 2010 in Uncategorized

heyy i just wanted to let everyone know that i have been on my diet for close to 2 months and will be starting kuvan soon. i am excited but nervous that it mite not work for me....any tips or ideas please message me.

8 Reviews of Starting Kuvan

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    yay! I can’t wait to hear if you respond… I’ve been on Kuvan for over 2 years now… if you have ANY questions, feel free to ask… most importantly, do not change your diet while on trial… try to eat the same amount of PHE each day.. that is how you will know if you are a true responder or not… best of luck! keep us posted :)

  2. Registered: Sep 24, 2007

    Posts: 0

    Fargo, North Dakota

    kuvan is a great way to keep your levels down. theres also a shot if it doesnt work

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Good luck! I hope you are a responder, and like Katie said keep your phe intake consistent until you know if Kuvan works for you or not. I have been using Kuvan for over two years, so let me know if there is anything I can do to help.

  4. Registered: Apr 5, 2010

    Posts: 0

    Zetel, INTERNATIONAL

    How does that work????? Where do you get KUVAN, what does it cost and what is the result? Do you have to have a certain age, and what does devilgirl1594 mean? Are you all American, is it easier to get Kuvan there?

  5. Registered: Sep 24, 2007

    Posts: 0

    Fargo, North Dakota

    I get my Kuvan from the hospital I go to…my doctor has them send it to me. and I ment that the pill kuvan doesnt work for everyone, they also created a shot you can use if the pill doesnt work.

  6. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Kuvan is a medication that is used to reduce phenylalanine levels. At the moment I think it is only being used in the US, Europe, and Japan. If you would like more info you can go to http://www.kuvan.com or ask everyone here.

  7. Registered: Dec 12, 2009

    Posts: 0

    Pitman, New Jersey

    thank you everyone for your comments i will keep everyone updated when i start the kuvan….

  8. Registered: Mar 30, 2008

    Posts: 0

    Southampton, INTERNATIONAL

    I was wondering whether there is anyone on here from the uk with Classical PKU who has tried Kuvan? What was your initial response from your dietician and has it worked?

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