What is this thing called Kuvan??

What is this thing called Kuvan??

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What is this thing called Kuvan??

October 13, 2011 in Uncategorized

So, for about a week or so, I have been trying to figure out what I wanted my first blog to be about. Then I had a request asking me what the Kuvan Drug was, and it hit me: there are still people living with PKU who have not been able to trial Kuvan or never even heard of it. Now please keep in mind that I am not a medical professional and that each person's experiences with this drug can be unique. Still, this is my account of my experience while I doing a trial for Kuvan: About two years ago, during my first semester as a college student, my metabolic physicians informed me of a new drug on the market for PKU. As they explained to me what this new drug was I became extremely excited as I thought, "finally a cure!". As if reading my mind, my physician stated that while this new drug, Kuvan, well help to lower phe levels along with dieting, it is NOT a cure for this disorder. In other words, Kuvan is drug presribed to help treat PKU, which will be able to make dieting for us less difficult. At this point in time I thought that something was better than nothing so I agreed to trial Kuvan the first semester of my freshman year at college. I was instructed to take my pills each morning around the same time either with: apple juice, water, or formula. Since the number of pills I had to take were based on weight I had to take about 15 small round pills each day. I choose dissolve mine in apple juice, to weaken the taste. I do not recall experiencing any side effects, just a slight after taste. After a couple months on the trial of Kuvan and weekly blood tests, it was concluded that I am not a responder to the drug. Now eventhough my levels were unaffected I do not discourage any of us from at least considering this trial. As stated earlier the amount of pills is based on weight, so it is possible that you will have less pills to take, or even more. College is a very busy time for students so I am motivated to try the trial again to see if the second or third time will be "the charm". I will be honest and state that I strongly dislike taking pills so this form of drug was not my favorite but I am still open to try. I continue to search for a drug that will treat PKU in the form of a shot, simular to how a diabetic person needs a shot of insulin- but thats just my opinion. Please remember that each of our reactions to Kuvan can vary and are unique. I highly encourage to talk to your metabolic pyhsicians about Kuvan and what it can do for and your diet. Also be sure to search for expert opinions, personal testimonies, and visit the Kuvan website: kuvan.com. **Please share any further advice you can provide about Kuvan and your experience or if you just have any comments on my personal testimony. Has Kuvan worked for you by lowering your phe levels? **

2 Reviews of What is this thing called Kuvan??

  1. Registered: Sep 16, 2011

    Posts: 0

    Fullerton, California

    From my research I understand that Kuvan actually matabolizes Phe. Supposedly it will lower your blood Phe levels as much as 30 percent. Obviously this allows easier control of Phe levels.

    An interesting note. I also took Kuvan as a trial, and was deemed as not being a responder but I still take the drug right now. Appearently it does have an effect but not enough of an effect to deem me as a responder.

    I take 8 Kuvan a day and 45 of PheBloc.

  2. Registered: Apr 17, 2011

    Posts: 0

    Twin Lake, Michigan

    wow amazingly cool

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