PKU drug trials - Side effects (Phenylketonuria)
Channel: Richard_FitPKU
Date: 21/02/2024

In this video I describe my first week on a PKU drug I had never taken before (Sapropterin/Kuvan).

I share my experiences and how I felt while starting the drug/trial and explain why everyone should be mindful of these feelings, especially if you respond very well to the drug or another type of PHE-related PKU medication. 

I'm also joined by another fellow PKU adult from Australia who shared their experience of starting PKU drugs aimed at reducing PHE levels. We hope these drugs not only reduce our PHE levels but also give us the extra margin in our protein tolerance level to increase our overall protein from food. 

Luckily, that was the experience for me and I'm very thankful.

Thank you to bianca.pku.life (Instagram) for being in this YouTube video and sharing her experience. If you haven't followed Bianca's Instagram page go check it out. She is an inspirational PKU woman who has achieved so much in her life, she is so helpful and a valued member of the PKU community.   


Follow me below Instagram:  @Richard_fitpku   Youtube: @Richard_fitpku

#phenylketonuria  #pku #kuvan #Sapropterin #raredisease #disease #metabolicconditions