PKU.com Community Discussion Forum Adults and PKU New to Kuvan and 42 year of age

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #7362
    Avatar of John
    jgtied2
    Member

    I am going to be starting KUVAN here in the next couple days, not sure about it because Iam not much of Pill taker. I am always thinking of any side effects that pills will have. I have not been on diet since I was about 8 yrs old, and now 42. nAny suggestions, information, experiences or any comments would be welcome.

    #7365
    Avatar of Breanna
    BreaMarie91
    Member

    Just try not to freak yourself out. When I started Kuvan in October 2007 I was a freak about watching for side effects . I think the only side effect I’ve ever had are mild headaches. They’re far and few and I personally think the reason I get them is because sometimes I got a long time without eating food or I don’t eat enough and my level drops BUT my doctor and dietitian don’t know if that really is the reason. We don’t even know if it is related to Kuvan or not because for awhile after starting Kuvan I became somewhat of a hypochondriac lol!!
    Like I said, I know your worried and that’s normal. I was to, but I’m glad I gave Kuvan a try because I responded amazingly.

    #7374
    Avatar of petrina
    batwoman
    Member

    hi, is kuvan only for mild p.k.u or do classical pku-ers respond too??? i live in Ireland and am only starting to get information on it… hope u respond well…i have been on diet all my life but am no angel on it!! my university years were a bit iffy!!!!trying to get levels down as want to get pregnant but getting bit de-motivated…will just have to keep smiling and get my act together!!!

    #7377
    Avatar of Breanna
    BreaMarie91
    Member

    Since there are so many different PKU mutations doctors can’t really say if all people with hyperphe or all people with Classical PKU will respond. I have classical PKU and I went from being allowed 300 mg of phe (or 20 exchanges) to 1000 mg of phe (or about 68 exchanges). So I responded great! You just have to give it a try and see what happens.
    Lol, I know what you mean. I’ve been on diet all my life and will never go off but I’m not perfect.

    #7378
    Avatar of petrina
    batwoman
    Member

    o wow!! that is fantastic!!! i am only on 4 exchanges!!! i will have to get on to my doctors …i asked the dietitians but they had no idea what i was talking about… as for being on the diet…yes it can be very challenging.. and i like to eat out a lot..

    #7462
    Avatar of Michael
    Michael
    Member

    I have to ask, what is an exchange? I have PKU and was stick to the diet until age 17 and now at 41 am back on again and have now finished 2 bottles of Kuvan, but I have never heard about an “exchange.”

    #7467
    Avatar of petrina
    batwoman
    Member

    in Ireland we call them exchanges but don’t know what anywhere else calls them. An exchange is 1 gram of protein. How are you finding being back on the diet?? It must be extremely hard? I have been on the diet all my life. When you were off the diet did you eat meat etc??? Did you notice any side effects? GOOD LUCK ON THE DIET AND KEEP IT UP!!!!

    #7511
    Avatar of Missy
    MissyB2275
    Participant

    Hello. Michael…. yeah the thing about exchanges and counting by mg of phe can be confusing. But I believe batwoman is mistaken cuz 1 exchange cannot be 1 gm of protein as I believe 1 gm of protein is around 50 mg of phe and there is only 15 mg of phe for 1 exchange. I myself prefer to count by the exact mg of phe that I am getting each day. It is so much more accurate. But if I count by exchanges I only get 15 exchanges a day which equals 225 mg of phe a day which is where I am at. It isn’t alot at all. I’m not sure how to explain what an exchange is but it is 15 mg of phe per exchange. And from what I’ve been told is that there is like 50 mg of phe per gram of protein so 1 exchange is not a gram of protein.

    #7537
    Avatar of Nick
    arkham
    Member

    I was on Kuvan during the study before it was approved, and had no negative effects. I only responded to about 28% rather than the 30% required to go on with the study. However, I’m about to start another study on cognitive functioning and Kuvan – specifically whether cognitive function is improved by Kuvan. Someone asked about being off-diet. I was off-diet for almost 30 years, but I’ve found going back on hasn’t been that hard. Giving up cheese hasn’t been easy, but fortunately my phe tolerance is high enough I can have a bit occasionally. Mostly, I’ve given up meat – and I wasn’t a big meat eater, anyway, and had to develop a taste for vegetables. Really, it’s been a much healthier diet for me than what I ate previously, and I’ve discovered the joys of Indian food

Viewing 9 posts - 1 through 9 (of 9 total)
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