Community Discussion Forum Adults and PKU Anyone on Kuvan and Responsive? Reply To: Anyone on Kuvan and Responsive?

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Hey everyone! Although I am new to this site I am not new to PKU. I have had it since 1967 and stayed faithful to the diet until 17 years old. Since then I have been on and off and on and off…. But now Dr. Koch suggested it would be good for me to try Kuvan. So, I did. I have finished two bottles now. I went in thinking like blondiexoxo above. I wasn’t on the diet and I liked eating what I wanted. Also I figured, that if that is what I was used to doing and if Kuvan really works than my phe level should come down anyway dispite whatever I ate. When Dr. Koch tested my blood I was at a dangerous 23. Then after taking Kuvan for a month and a half he tested my blood again and it actually went up to 24.8 nearly 25. Since then I have decided to go back to the good old NO MEAT or High protein diet. Oh I forgot to mention I have y277d, (which is a good gene), along with the bad gene that allows me to have small amounts of extra Phe. I am hoping I see that increase like some of you have. But, as for eating whatever you want, i did that and had bad results. Wish me luck on sticking with it!

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