Is it possible to gain muscle with PKU?

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    • Is it possible to gain muscle with PKU?

      Hey everyone.

      I'm 15 y/o male and I have PKU. My diet has become pretty liberal compared to what it used to be due to Kuvan (Now my average Phe intake is around 120-130, whereas it used to be 25-30) and I still take 50g of Phenex 2 everyday. but I have some questions. I personally look very skinny when compared to others and have barely any muscle. (5'9" and 127lbs) I run, but I have not experimented with any sports along the lines of football and soccer.. nor do I perform intensive weight training. Is it possible, if I lift weights and workout routinely, that I can POSSIBLY gain muscle mass? or will my limited protein intake make it pointless?

    • Hi Kalemtan;

      Great to hear you respond to Kuvan. Of course it is possible for you to gain muscle mass. Personally I have played waterpolo for some 20 years and because of that have gained muscle too. Intensive training or bodybuilding is possible too of course. You will have to consult your dietician to make sure you get enough protein and vitamins. She can consult you on how to adjust your diet to keep within the boundaries of your diet AND have enough food sources to enable you to participate in the kind of training you would like. I'd advise you to do the training under supervision especially since your body is still growing / developing.


      Paul van Berkel
      Eindhoven, The Netherlands
      ESPKU Boardmember / Project manager

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • I agree with Paul, definstely its possible, butva chat with dietitian would be helpful. As for me i find personally it was hard to gain weight but once i got it, i kept it without problem ( talking about muscle mass) . I' ve been practicing kung fu for several years, now it' s mostly extreme hiking/ trekking, biking, diving.
      Overall, we do get all the benefits of exersise and it's somewhat easier to manage PKU once you have an exersise routine
      So go for it!
      Carpe Diem!
    • I had a problem, but it was more because I didnt access all the available information for me. I have classic PKU and I'm 5'6'' and I Use to weigh 118lbs soaking wet, with in about a month and a half I managed to pull off a weight of 126lbs of pure muscle mass. I wish I knew about all this stuff when I was younger. All I did was talk to my dietitian and she helped me gain! I consume a lot of calories lol

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