What is Palynziq?
First of all, I'm not qualified to define Palynziq, so let me pull one from the Palynziq website:
"When the PAH enzyme is missing or doesn’t work properly, it can lead to toxic levels of Phe in the blood, body, and brain. If your blood Phe levels are high, you may experience:
PALYNZIQ lowers blood Phe levels by acting as a substitute for the PAH enzyme that is missing or not working properly. That’s why it is known as an enzyme substitution therapy. PALYNZIQ may work in all types of PKU." Source: https://www.palynziq.com/what-is-palynziq
I first heard about Palynziq at my clinic in Vancouver, Canada, but it was always a far off dream because it wasn't approved by the FDA. As you read in my last post, living in Washington State with PKU hasn't been the easiest, but what it does provide is access to Palynziq. AND because there's no generic, Biomarin (the company that owns Palynziq) is able to help with a co-pay assistance cards for qualifying patients and I QUALIFIED!
I'm not going to talk about my Palynziq journey just yet, I'll share more once I start the therapy, but until then, I'll be releasing testimonies from a few different people on various points of their Palynziq story. For now, let's do some:
What are the benefits?
As you'll read in the coming weeks, Palynziq works differently for everyone, but as long as you are able to continue Palynziq without severe reactions, everyone will respond to it eventually because it is a synthetic way to break down phenylalanine, rather than just an aid like Kuvan. Everyone responds at different times, but those who have had success with Palynziq are able to eat a significant amount more of protein than they used to, while feeling their best mentally and emotionally. It has potential to break down protein so well that the PKU patient is able to come off their diet and all other medication fully.
Make sure you are always consulting your doctor before making any changes to your diet and medication.
How is the drug administered?
The drug is administered via syringe anywhere from once a week to once a day based on your dosage.
Are there any side effects?
The most common side effects are joint pain, allergic reactions at the injection site, and most seriously, Palynziq can cause a severe allergic reaction (anaphylaxis) that may be life threatening and can happen any time during treatment with Palynziq
Is there any way to combat these side effects?
Before starting Palynziq, you will be prescribed pre-meds which consist of antihistamines and pain killers to combat joint pain and injection site allergic reactions. As for the anaphylaxis, all patients on Palynziq must carry an epi-pen with them at all times.
Does this mean you could potentially eat meat, dairy and nuts at some point?
Why yes, yes it does.
The journey begins March 1, 2022.
Here are some images and videos to help explain Palynziq a little better: