Kuvan Responder Trial: Delayed Results Presented and Explained

First let me express my apologies for being away from this blog for so long. I spent the final months of 2011 researching, writing and defending my masters’ thesis. It was a very intense process that consumed any free time I might have had left after also working fulltime as a communications and marketing specialist. I am now in the process of working through my last class at the University of Tennessee and as I edge closer and closer to my May 10 graduation, my focus is once again shifting back towards PKU.

One of the subject areas I left unresolved during my five-month hiatus was the results of my Kuvan responder trial. To be fair though, I had anticipated hearing at the end of the trial a clear yes or no as to whether or not I was considered a responder to the first PKU prescription drug. Instead, my phe levels were all over the place and a number of variables were suspected to have led to the erratic results. Needless to say, I needed to work through some of this confusion before reporting back to my blog followers. To sum it all up in one word, the results were inconclusive. Here’s a closer look at my blood test results:

PKU Kuvan Responder Trial Results DataFor any readers who might need some additional context, I have been told that a person who does not have PKU will normally have a phe level of 0. If that same person just finished eating a meal that is high in protein, their phe level might register at a 1 or 2. However, once the food has been fully digested, the phe level will return to 0. Clearly, from these results, my phe level hasn’t dropped anywhere near safe levels.

In addition to blood tests, I was also asked to track mood or disposition changes I experienced throughout the trial. I will admit that after being on Kuvan for several days, I felt as though I might be slightly more relaxed and getting a better night’s sleep. However, assuming that because I knew this medicine might improve the way I feel, there’s a possibility that these mood changes could also be attributed to the “placebo effect”—the idea that a treatment appears to exhibit results simply because a patient believes it will work.

Ultimately, my clinic recommended I consider a second Kuvan responder trial; this time with more emphasis on controlling some of the variables that might be responsible for the inconclusive results. I haven’t rejected the idea of giving it another shot, but obviously with grad school still in progress, it will probably be several months before I do. During my next post, I’ll take a look at what some of those variables are and also discuss what changes might occur in a second Kuvan responder trial.

–NM

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1 Comment

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One response to “Kuvan Responder Trial: Delayed Results Presented and Explained

  1. Pingback: Kuvan Responder Trial: Prepping for a Second Attempt | PKU Parlor

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