PKU.com Community Discussion Forum Generation PKU NEW MEDICAL ADVANCEMENT Reply To: NEW MEDICAL ADVANCEMENT

#6665
Avatar of Breanna
BreaMarie91
Member

She might be talking about a drug called Sapropterin. If FDA approves it then it will be called Kuvan. It’s suppose to help your body break down more Phe. I’m in a study for it right now and I have classical PKU. I found out on Monday that it is working for me, after four weeks of being on Kuvan my levels went from 2.5mg/dl to 0.1mg/dl. So my dietitian is having me add 70mg of phe to my diet by mixing milk into my formula. She was pretty surprised that it worked for me because she said in a lot of Classical PKU it either doesn’t work or it doesn’t work as well as it does for people with hyperphe. It also depends on the person, for some people it might triple their phe intake, but for others it might only add like 50mg of phe. nBre

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