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

#7840
Avatar of Nick
arkham
Member

I’ve been on Kuvan since November – and have been responding well. On the amount of protein I was taking in when I started, Kuvan brought my level down from 11.6 to 3.8. I’ve now added 10grams of protein from food and cut down my formula accordingly, and my last phe level was 4.1. Chances are I’ll be raising my protein intake another 5 grams soon. On Kuvan, the only difference I’ve noticed is that my mind started feeling less fuzzy after the first dose. Other than that, I haven’t noticed anything. However, I’m glad to have my phe levels down below 6. I just wanted to note, as Virginia Schuett’s article was mentioned earlier – I don’t think she’s against Kuvan, per se. She just has concerns about the process by which it was approved by the FDA, and about the long-term safety of Kuvan. For my part, I took her concerns into consideration when I started Kuvan.

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional