Community Discussion Forum New to New here…Adult w/ PKU

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #8453
    Avatar of Terri

    HI evrybody! I'm so glad I found this site! I am 46 yrs old…have 2 girls ages 13 and 10 (both non-PKU) and recently went back to monitoring phe levels in May 2009…after 10 yrs off-diet! I tired the Kuvan…but it did not work for me…I was not a responder… would LOVE to connect with other adults about my age w/ PKU..and all of you people as well! Im glad we are here!

    Avatar of Katie

     Hi Terri… Glad to hear you are back on diet!  I am glad you found this site too!  I think there are some people out there around your age looking for people with PKU around the same age.  I am only 24, however would still love to stay connected!  I am sorry to hear Kuvan did not work for you.  Stay optomistic though because I am confident there is more to come to make life with PKU easier to live with.  Where are you from?

    Avatar of Eugene

    I was off diet for 34 years. Just started back in Feburary due to effectes of PKU which have never effected me before. I tried Kuvan but had adverse reaction to it and needed to be taken off after 7 days. I am working on an applcation for PKUers. You can find more on facebook looking for PKU Tools or go to

    Avatar of cindy

    hi terri im 40 yrs old with 2 boys 18 an 13. i have classic pku an was taken off the diet when i was 9yrs old. the only time i went back on it was when i was pregnant so  most of my life ive been off the diet. ive thought about going back but to be honest im not sure if i could handle eating the food an formula after years of eating anything i want. im sure my phe levels are off the roof right now. ive wanted to find other pku adults who understnad whats its like living with pku. im glad i found this site.

    Avatar of CHRiSTiNA

    Hey there! Im also new to here and would love to meet others with PKU. Im 24 and I have been off and on with my diet. Im on Kuvan right now, so it helps- I was shockingly surprised that it did bc my Dr told me most people with classic pku, like myself, never respond to it. My husband and I are currently trying to start a family and it will be my first sooo I will have lots of questions, =)  Thx!

    Avatar of Nick

    Hi, I'm 36 and was off the diet for about 30 years.  I've been back on for about 3.

    I definitely recommend going back on diet.  Even if you think you aren't having problems being off diet, it's worth being back on. 

    I am on Kuvan, have been for about a year, and I've gotten my levels from around 12 prior to Kuvan to well below 6.  My most recent level was actually a 1.6.

    Also, one of the big issues that has been discussed recently is the increased likelihood of osteoporosis in PKUers.  Off-diet, apparently low bone density is common, and on-diet, PKUers often don't get enough calcium.

    I just had a bone density scan yesterday (should get the results tomorrow), and started a calcium supplement today.

    One more thing to keep in mind.

    Avatar of Nicole

     Hi there….

    Arkham – Did you have this bone density scan because your having problems with being OFF your PKU diet for all those years??? 

    Sorry if am being a bit nosey but just interested in all the symptoms and what damage getting caused by being OFF low protein diet.

    Nicole x

Viewing 7 posts - 1 through 7 (of 7 total)
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