Not a Kuvan Responder =(

Not a Kuvan Responder =(

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Not a Kuvan Responder =(

January 11, 2010 in Uncategorized

So I started a Kuvan trial a few weeks ago. Part of the reason I waited so long to try it was because I kind of assumed I wouldn't be a responder. I am really sensitive to any slight changes in my diet. When I was a baby, my parents tried something called the "PKU challenge" which meant feeding me a high protein diet for 7 days to see what would happen. My levels shot up to 40 at that time. I sort of guessed that whatever enzyme was missing probably wasn't going to respond very well. I was pretty bummed out about it because I've definitely had my shares of ups and downs with this diet. I'm seriously y trying to be committed to this diet now, but I was really hoping I could be a little more relaxed with how I eat. I've heard so many people on here share how great it is. I know not everyone with PKU is on Kuvan....I guess it's time to get a little more creative with my low protein foods. Just thought I would share with you all because I'm grateful for everyone's support on here .

6 Reviews of Not a Kuvan Responder =(

  1. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Hey Sarah I am sorry to hear you are not a responder. At least you can say that you gave it a try. Keep working at the diet, and of course whenever you need help we will always be here to do what we can. If you need help with coming up with low protein recipes just let me know! I am sure I could help you come up with some creative and easy foods to make. Hopefully in the near future they will come up with something that everyone who has PKU will benefit from. If I remember correctly PEG-PAL is being studied right now, which is an injection that is predicted to work for everyone. Does anyone know how trials with PEG-PAL are going? Take care and keep up the amazing job you’re doing on your diet!

  2. Registered: Nov 12, 2009

    Posts: 0

    , Georgia

    Hey Sarah! I’m really sorry that you didn’t respond to Kuvan. I am still praying that there will be something new out for PKU soon!

  3. Registered: Dec 2, 2009

    Posts: 0

    Phelan, California

    Oh man that sucks I am sorry! I want to try kuvan too but like you I have always been very sensitive with my diet changes. I have a feeling too that I will not be a responder either right now I am trying to decided if I even want to try it. I dont want to get my hopes up but I guess its worth a shot. Well keep up on your diet you can do it! :)

  4. Registered: Jul 1, 2009

    Posts: 0


    Hi lorsar. I’m sorry to hear about that. I’d love to try Kuvan. I’m not sure whether I’d respond or not. I am classical PKU but when cheating I don’t tend to have as many symptoms as everyone else. So I’m not sure. But I haven’t got the opportunity because I’m in Perth, Australia and we don’t have it here yet. Some of the clinicians in Melbourne reckon we won’t ever get it because we have such a low PKU population over a large distance, so we miss out on heaps of cool PKU foods, but if that’s the case we’re going to fight for it.

  5. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Wow i am so glad i just found this post. I am gearing up for Kuvan but I have the same hesitations. I have a super low tolerance and am also sensitive to slight changes. i am still going to try and I will keep you updated, but I have this feeling that I may end up in the same situation. I did hear about the PEG-PAL trial which is enzyme replacement (through shots, I think) for people who aren’t responders. Have you heard of it? That may be an alternative… anyways… I love to cook and love finding healthy options for the diet, so if you are ever in a rut let me know I would love the challenge of finding a fun healthy meal or snack : ) (I’m a food nerd) What is your PHE tolerance?

  6. Registered: Sep 16, 2011

    Posts: 0

    Fullerton, California

    Its interesting to read this because I as well was on a Kuvan trial and was deamed a non responder. But I take Kuvan now everyday. My doctor “Dr. Richard Koch” informed me that what they deamed as a non responder didnt mean that it was ineffective in lowering blood Phe levels but rather it meant that we are not as responsive as others, but are still responsive.
    BTW both myself and my sister were deamed non responders and both of us take it today. It made a significant difference in her being able to get pregnate and have low levels through her pregnancy in order to have a very healthy child.
    I dont think many doctors realize that Kuvan can still be effective in loweing blood Phe levels even if during a trial you were deamed as a non responder.

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