Community Discussion Forum New to PKU cure? Reply To: PKU cure?

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First of all just to clear one thing up Kuvan is not a cure. Another option for treatment maybe, but it doesn’t take PKU away. Basically Kuvan kick starts the enzyme PAH that is lacking in our bodies to help our bodies break down more phe.
Like Sarah said, not everyone with PKU responds to Kuvan because there are so many different mutations of PKU, only some will respond. Even those who do respond might respond differently then another Kuvan responder.I know a guy who goes to my clinic and my dietitian said he was off diet, went on Kuvan and all he had to do was take meat out of his diet and his levels went from 20 to 6. Then I know a girl my age who didn’t respond at all.
For example I’m on Kuvan and I personally think I’ve responded great to Kuvan! I went from 300 mg of phe to 1030 mg! Now I still have to drink formula, do blood tests and monitor my phe intake but of course it’s easier now because I have more freedom. Sometimes it’s hard for me to get all that phe in because the only new foods I’ve tried are regular bread, tortillas and pasta and I only like the bread. The funny thing is I’m only getting 650 mg of phe through food, the other 380 I’m adding into my formula at the end of the day with regular milk. And of course because I’m not getting all my phe in my levels can be low, except the last two levels I did came back as 8mg/dl and then 6.2mg/dl, so that just proves that even with Kuvan high levels aren’t unheard of.
I hope this helps! nBre

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