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April 8, 2010 in Uncategorized
Registered: Apr 24, 2009
Cornwall, New York
Katie said on April 9, 2010
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
Registered: Sep 24, 2007
Fargo, North Dakota
Carolyn said on April 9, 2010
kuvan is a great way to keep your levels down. theres also a shot if it doesnt work
Registered: Sep 12, 2006
Breanna said on April 10, 2010
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.
Registered: Apr 5, 2010
Marion said on April 11, 2010
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?
Carolyn said on April 11, 2010
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.
Breanna said on April 13, 2010
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.
Registered: Dec 12, 2009
Pitman, New Jersey
victoria said on April 13, 2010
thank you everyone for your comments i will keep everyone updated when i start the kuvan….
Registered: Mar 30, 2008
Patrick5678 said on April 30, 2010
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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