Palynziq: The First Day
My last few posts were interviews with people who were at different points on their journey with Palynziq. It has been great to follow their stories and see even how much more they've responded since their interviews!
Since I interviewed these individuals, I wanted to share my story. For this particular blog, I will start with the days leading up to day 1 of starting Palynziq, because that in and of itself was a lot to take in!
Imagine me, just moved to America, Palynziq has never been available in Canada, and I'm on a video chat with my NP talking about starting Palynziq.
I went through a program where they teach you about the side effects of Palynziq. Now there are a whole bunch of them:
The most common side effects of PALYNZIQ include injection site reactions (such as redness, itching, pain, bruising, rash, swelling, or tenderness), joint pain, headache, skin reactions that spread and last at least 14 days (such as itching, rash, or redness), nausea, stomach pain, vomiting, cough, mouth and throat pain, itching, diarrhea, stuffy nose, feeling very tired, dizziness, anxiety, and low levels of Phe in your blood.
The most serious side effect is anaphylaxis. When you are on Palynziq treatment, you are required to carry an Epipen on you at all times for this reason. I can't remember exactly what the stats are, but it was like less than 50% had anaphylaxis reactions and even less had it a second time when they continued the drug. But because there is a chance of anaphylaxis, the FDA requires a training course on what the side effects are, how to identify anaphylaxis, and how to use an epipen.
When I received my supplies in the mail, I was overwhelmed by the flyers, brochures and leaflets that flew out of my Biomarin bag. THAT'S when it felt real.
They also gave me a trainer Epipen and a trainer Palynziq dose needle. Once I was on a second video call with my clinical coordinator from Biomarin, she taught me how to use the Palynziq needle and where to inject.
Weeks later was my first appointment, March 1, 2022. I live in Washington with my husband so we got in the car and made our way to OHSU in Oregon to have my first injection supervised. I packed my pre-meds, epipens, placemat that shows you all the supplies you need, and one of my 2.5 injection needles.
When we arrived at the hospital, I had my blood pressure taken and they said it was high. OF COURSE IT WAS! I was a little nervous. It wasn't high enough to be considered a concern so we pressed on. After being taught to inject on a 45 degree and to "pinch an inch", I took my 2.5mg needle, and poked my stomach for the first time.
The only way I can describe how it felt was poking a balloon. It took a bit of pressure for the needle to go in, but once it did it slid in smooth and I was able to inject. Injecting the medicine in is always a little bit more painful for me so its interesting how most people are affected by the needle part of it all.
I then stayed at OHSU for an hour so that my NP could monitor me and see if I was going to react to the medicine. Most people that have anaphylaxis reactions have it after the first injection, so that is why they do this.
I had no reactions after my first injection and after an hour I was released and I went to go get sushi with my husband to reward myself for such a big day. And thus, began my journey:
This is my titration schedule, as is everyone's schedule roughly when they start Palynziq. Everyone ends in a different spot but this is how its generally done.
Currently I'm in the 20mg once daily for 24 weeks period, but I will tell you all about that in my next blog!