Community Discussion Forum Adults and PKU Anyone on Kuvan and Responsive?

Viewing 15 posts - 1 through 15 (of 15 total)
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    Avatar of Morgan

    Was wondering if anyone is on Kuvan and if they are responsive? Also what adjustments to your diet have you had to make.
    Thanks, nDdraig

    Avatar of Breanna

    I am! Before Kuvan I was allowed 300mg of phe and now I’m up to 1000mg of phe.
    I haven’t changed much with my diet. I’ve started eating regular bread instead of low pro and regular tortillas. On average I think I actually eat 650mg of phe and I get the other 350 by adding milk to my formula at the end of the day.


    BreaMarie91, That is great that you are responsive to the Kuvan. I’m on day 3 of the Kuvan trial, I’m not sure if I can tell if I’m responsive or not – My diet has been so strict for the past 5 days and it feels like I’m not eating anything. At 300mg phe per day was recently cut from 600mg phe/day which amazingly allows for much more food in my diet. Did you feel anything during your trial, I have noticed that my mood has been good for the past two days of taking Kuvan, but I can’t say its not do to the more strict diet. I won’t know if I respond until after the trial, but any advice or information you have about your Kuvan experiece would be great. Thanks!!

    Avatar of jessica

    hi i have been on the kuvan trial since it started here in texas and i have had a great response my levels have dropped over 40% overall
    im not really on my diet i eat just about whatever i want. but i dont like any type of meat so i hardly ever eat it. the medicine has helped regulate my levels so i can eat just about whatever i want without worrying that something will happen

    Avatar of

    Im on kuvan trial – having 13 tabs a day and eating completely normal diet. Fish, dairy … levels have gone down form about 1200 to 500 which is a safe range, and a great result.
    In regards to Phe measurement- not sure how you work it out in US.
    will be coming off tril soon though as I want tohave another baby.


    I should be finding out how I have responded to the Kuvan. I will say this… I can focus and process complex situations much quicker than the past. As an operations manager at my company, I have realized that I am much more clear headed on the Kuvan… Now – again – I can not tell if its the 300mg Phe Diet or the Kuvan and my dietician won’t tell me how my blood levels look until sometime this week. Prior to Kuvan trial – my blood levels were at 6.4 and 6.7… A 40% drop would bring me easily into the normal range… We’ll see…

    Avatar of Breanna

    Hey, I’m crossing my fingers for you! I hope you find out that your responding to Kuvan. When I started Kuvan last October I was starting Kuvan through a study and so I didn’t get to know if I responded for a whole month. I did weekly levels and I almost went insane not knowing them every week. My dietitian told me later she thought I was going to break into the clinic to find my levels .

    Avatar of Philip

    Hello everyone,
    I have posted a new video on This new video details my experiences with Kuvan 14 days into my month long trial of the drug. Information in the new video includes, the results of my first blood test while on Kuvan, any side effects/concerns, and whether or not I have noticed any difference since starting the drug. nTo view the video Visit: nalso, I am still looking for others who are willing to participate in any way.
    Please contact me for more information: nPhilip Welch

    Avatar of Michael

    Hey everyone! Although I am new to this site I am not new to PKU. I have had it since 1967 and stayed faithful to the diet until 17 years old. Since then I have been on and off and on and off…. But now Dr. Koch suggested it would be good for me to try Kuvan. So, I did. I have finished two bottles now. I went in thinking like blondiexoxo above. I wasn’t on the diet and I liked eating what I wanted. Also I figured, that if that is what I was used to doing and if Kuvan really works than my phe level should come down anyway dispite whatever I ate. When Dr. Koch tested my blood I was at a dangerous 23. Then after taking Kuvan for a month and a half he tested my blood again and it actually went up to 24.8 nearly 25. Since then I have decided to go back to the good old NO MEAT or High protein diet. Oh I forgot to mention I have y277d, (which is a good gene), along with the bad gene that allows me to have small amounts of extra Phe. I am hoping I see that increase like some of you have. But, as for eating whatever you want, i did that and had bad results. Wish me luck on sticking with it!

    Avatar of Nick

    I’m on Kuvan and responding well. My levels were about 11-12 before Kuvan, but on-diet with 30g of protein from food and 30g of protein equivalent from formula. My most recent level on Kuvan was 3.9 while eating 40g of protein from food and getting 20g equivalent from formula. As someone else mentioned their mutations, I’ll mention mine, I have one mild, Y414c, which responds well to Kuvan, generally, and one severe, G272x.

    Avatar of Whitney

    Hi I’m just back in the US and am thinking of trying Kuvan. Not available where I was in Europe. I read everyone’s personal experience with it….now I’m wondering has anyone had any side effects and if so, what where they and how severe? Thanks for the info!

    Avatar of Tracie

    Hi HWhitney,
    I am on Kuvan for about 5 onths now.
    In the beginning i had heartburn,and that has been it.It helps with my aniexty,and tends to calm me down. nJust remember everyone may respond different.
    Good Luck!

    Avatar of Nick

    I’ve been on Kuvan for about 4 months, and have had no noticeable side effects.

    Avatar of Gordon

    I am 39 years old and have been on Kuvan for 6 months. I am responding very well. I am currently taking in 1250 mg.of phe daily and hoping to increase even more. My levels are ranging from 1.8 to 4.2 My eating has changed alot. I tried chicken for the first time 2-27-09. I take 15 tabs daily and the only side effects I have had are headaches.

    Avatar of Sean

    i’m not Kuvan but i’m on pheblock it dos the same thing as Kuvan so if u cant git that tray the pheblock.

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