has anyone ever heard of pegpal my name is mary caite and i am 18 years old with classical pku, my life has been a struggle with keeping on diet, although it did not hinder my chances of getting into college successfully at CW Post on long island. over the summer i was wondering how im going to keep up in college and do my diet. it got my mind running every day and i was soooo nervous!!! because no matter how hard i tried, my levels were around 17-18 which is really bad : i hate to admit that i followed a poor diet because of all of these amazing stories of successful PKU students. BUT in august i was told by my nutritionist that there was a clinical trial opened to people with pku who have high levels. its a drug called pegpal and i signed up for it. It is a shot of enzymes that are injected into subcutaneous fat in your arms, legs, or stomach. (stomach is least painful believe it or not haha) but these shots are very bearable. the first couple of months were very slow because of the very small dose they gave me. it was all done just in case of any side effects. once they got to my 4th increase of the enzyme i was at a good, steady state. my levels went from an 18 down to an 8. i did not respond to kuvan, but this drug, i responded better than many. my doctors think they have a good dosage for me when i stay on diet. (which is 4 shots a week) im still being studied and going to the city once a week and donating my time and gas money to get this drug tested and passed by the FDA for it to go on market. this drug is different than kuvan which you might have heard of. both drugs are under biomarin (so it has a good reputation behind it). but kuvan only worked for 50% of people with classical pku and only worked for mainly other types. but with the pegpal, some people have shown good results and have been able to go completely off diet with classical pku! ( and that INCLUDES formula)... the enzyme in the shot replaces the defected enzyme we have. there have been better results than kuvan and in the clinic where i go to get the shots, only a couple of people did not respond as well as the rest. i HOPE this drug does well in the future because its SO GREAT to realize how CLOSE they are to finding better treatments for this condition. i only take four shots a week. this is without spreading them out. and to take shots rather than have a hard diet and annoying formula to drink is SO worth it. comment if you have any questions! id love to answer them, and if i dont know i will get back to you on friday and ask my doctor at the clinic for biomarin!!! if you have heard of it, or are currently taking pegpal, let me know! id love to see how others are doing!!!!