What is Phenylketonuria PKU
Phenylketonuria [PKU] is a human genetic disorder (though it is possible to exist in mice), in which the body lacks phenylalanine hydroxylase, the enzyme necessary to metabolize ph...
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Kuvan
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Hi I'm new to the PKU Support Group. I'm looking forward to getting to know more about everyone.
I was wondering if anyone has tried the Kuvan Therapy to lower Phe levels?- I was recently tried on it it was successful I went from a starting phe # of 27 ( for classical pku ) ... to 21 with-in a weeks time however unfortunately I had to discontinue the Kuvan because my liver profile went through the roof. ...at the start of therapy it was normal when within 10 days soared. I don't know if I will try it again or not. I had some underlying conditions that were discovered- gallstones- I just underwent removal of my gallbladder. My liver profile returned to normal BEFORE my gallbladder removal that's what makes me think the rise in my liver functiion test was caused by the Kuvan. But I'm not sure if it's worth trying again till they get more nfo in the drug. Has anyone tried Kavan? Posted on 10/18/08, 09:10 pm |
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I tried it when it was awaiting FDA approval. i was one of the test subjects haha. it actually worked for me, and lowered my levels a lot (and they were pretty high) but it wasn't enough for them to give it to me once it was approved. I had absolutely no side effects! 
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i am on kuvan and am doing fine( as far as i know- your liver thing kinda scares me) the only side effect i experienced was a pretty significant rise/fall in blood glucose levels which i later found was due to the prednisone i was taking for my asthma. it's hard for me to tell about side effects because all the meds i take have the same side efects so it's hard to know which med is causing the problem.
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what is kuvan?
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If you haven't heard of Kuvan, you really should learn more about it. I learned about it on youtube.
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