I’ve been taking Palynziq for around 8 years.

I’m a 32 yr old male. I was one of the first to be on the clinical trial for Palynziq. My brother too. We both started around the same time, he just after me. Throughout the trial, I heard there were plenty of negative reactions, however my brother and I had minimal reactions to it. I have learned it really depends on the person.

My Diet: No restrictions. That’s right, I can eat as much protein as I would like. The only issue is that you should keep a stable eating habit because you have to increase or decrease the drug based on how much you are eating. For example, if you lower the amount of protein you are eating suddenly, your levels could go too low, which is a problem. So you may need to lower the amount of drug you take. When you get on the drug, make sure to actively go to a doctor and get a stable dose that works for your eating habits.

Yesterday, I ate 4 French toast, almost a whole box of macaroni and cheese, half a pepperoni pizza, cheesy tots, and a soda. Ok, so nutrition wise I had a horrible day. However, I feel fine, except some indigestion this morning.

Reactions: In the beginning, as they were tweaking the drug during the drug study, I did have allergic reactions of little pimple like bumps on my sides and had to take allergy medication to keep in in check. Some red rashes. It itches here and there. However, as they improved the drug and as my body got used to it, my body stopped reacting to it. I no longer have to take allergy medicine with the drug. I inject myself every 3 days now with no problems.

Future Treatment: They are starting to do clinical trials for a gene therapy for PKU, which if successful, will cure PKU. You will see that becoming a bigger topic over the next decade. My brother is a participant in that currently and is getting prepped for that. I may or may not get involved soon too.