Hi Everyone, I just wanted to share that i have been on Kuvan since Nov 08.I got my first PHE level back and it was 16.9.So we waited a bit to do my second level,and my levels were 9.6. My body needed to get Kuvan flowing through regularly. I am only on 4 pills a day,and no side effects. I do not have to take my formula anymore.(Thank God)I was on Phenex-2. I do understand that each person is different on the response so i was very anxious on what it was going to be. All i can say ITS DEFINITLY WORTH A TRY. Thanks for listening. nTracie-PKU
4 pills a day? wow. I’m on 19 a day…I know that dosage is based on weight, but…4? My levels have gone from around 12 to…well, at my current intake of dietary phe, 6, though it can be lower if I lower my phe intake. Still have to take formula, though, but down from 3 scoops a day to 1 1/2. Good for you that your levels have improved so much and that it’s allowed you to stop formula.
Yes i am very fortunate. nDr. Koch says its because of a rare gene mutation i got off of both my parents(Thanks Mom and Dad).LOL I was on 5 pills a day,but experienced heartburn so Dr. Koch told me to cut 1 back,and lets see what happens. I still don’t eat any high protein or any kind of meat,Chicken,fish etc. I am a pretty strict Vegan,but as i get older i actually enjoy it. Thanks for the compliment on my levels it feels great finally feeling like i have control nagain!
hello to you all, i want to thank tracie, and rach08 for getting on my friends list and ni still have no clue what i am doing here i just figure out how to talk to you all ? i guess i am use to like instant messenger where you type and talk at the same time. like i said i have been off my diet since i was 5 years old and i am now 42 tracie i really like you to email me i like to talk to you about having a child i have no kids of my own i guess i never will ??? only god know if i will or not i am just courious ok sorry you all this is not a topic it the only way i know how to talk to you all i don’t know much about a computer your friend J.Reed
HI JonaHreed, I would love to talk with you ,and children.It is totally possible to have a healthy child,and be PKU. nAny advice i can give you i will definitly do that. Never give up sweetie.My Hubby and I are actually thinking of another,and i’m gonna be 40 in July.(OUCH!)LOL I am also on facebook!Do u have it?Its free to join,and its lots of fun. I’ll be waiting to hear from you soon. Friends, nTracie-PKU
I was told to continue the Kuvan,and u will take a smaal amount of a supplement. nUnfortunatly Kuvan doesn’t give u all the nutrients needed when carrying a child. Talk with ur Dietition.There is alot of different things to try.ALOT
Hi this is catcocoa has anyone exprance side affects from taking kuvan? I get head acks off and on also stomach pain.for the first time I been getting lower neck pain and shudder pain. I take 19 pills a day and 100 mg.I'm thinking not taking my pills this afternoon and stop takeing kuvan all together. Can anyone help me.