PKU.com Community Discussion Forum That’s PKU life! Kuvan input Reply To: Kuvan input

#8842
Avatar of Patrick5678
Patrick5678
Participant

Thanks for your reply Breanna. I have only had 1 conversation with her on the phone about this and have received 2 emails.

In her first email she told me that since it is a milder form of pku and very different in terms of body chemistry she wouldn't allow me to try it. She also mentioned since I have good levels anyway, she couldn't understand why I feel the need to have it. I disagree with this.

There seems to be some sort of underlying issue here maybe the cost I don't know but she came across as not knowing much about it. It was me who also approached her in the first instance. I am still pursuing this and hope I get to try it.

In the email she just sent me she told me that the evidence to support use is very limited and therefore hard to draw conclusions from. Also she said that in 1/3 of patients using it have reported serious side effects but has'nt told me what they are. The only side effects I have heard about is minor ones like headache nausea which passes quickly as long as tabs are taken with some kind of food. It has been very general and no way at all specific. I do feel I need some solid evidence as to why I shouldn't as I have been listening to lots of talks on patient power series on pku which has been very positive. I don't understand completely at the moment why I can't try it.

Have you Classical PKU?  Your dietician seems very helpful and I expect quite knowledgeable.

What do you think I should do?  Can I have your email address please so can discuss this further?

 

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