PKU.com Community Discussion Forum Parent support Anyone know about Kuvan? Reply To: Anyone know about Kuvan?

#7398
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mayrogers13
Member

Honestly, when I was younger i had a big problem understanding my diet and did not do very well with my blood tests. I am now 19 and have everything in control. I would not trust Kuvan. This is only my personal opinion. There has been no long term study about the effects of high blood protein as Kuvan does not get rid of the protein, merely blocks receptors in the brain. Also, the study was only done with approximately 200 people actually taking the pill. There is no reason to try Kuvan if you are able to stick to your diet. I am only allowed 225 of phe or 5 grams of protein and am perfectly fine that way. Honestly, until there is a long term study, I wouldn’t do it.

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