Hi everyone! This week will be the start of my Palynziq spotlight series, where I'll be interviewing different PKU people about their Palynziq journeys, how they responded, and more information about their treatment. The point of this series is not to convince people to be on Palynziq, but for people who are curious to hear testimonies of how it worked for others, and to raise awareness about rare disease drug therapy.
I first met Sara when I posted a picture of my Palynziq marketing materials and she replied saying, "Hey, that's me!" Sara is a great advocate for PKU, Founder of Prosperous PKU, author of Ebook "Your Story Matters: Why It Matters and How To Tell It", and get this, we have the same Bachelors degree!
Here's Sara:
How long have you been on palynziq?
I have been on Palynziq since November 2018. I responded in March 2019.
Were you nervous about starting palynziq? Did you have any hesitancy towards starting your palynziq journey?
I was nervous! Some of my nervousness was around how much my life might change. There were definitely some big transitions. I wrote about some of my reflections here.
Was it challenging to get insurance or co pay insurance coverage for palynziq? How was that part of the journey for you?
My insurance did deny me initially. Fortunately, Biomarin has an excellent patient support team that navigates insurance appeals, and they made the process very easy for me. My patient care representative took care of most of the work on my behalf.
Walk me through your first day taking an injection, what did that look like?
I took my first injection at the clinic with my medical team. After I injected, we had a conversation about the transition and what I should expect about the titration process while they also observed to make sure I did not have any reactions to the medication. I did my second injection with a patient care coordinator from Biomarin, and from then, I was able to do my injections on my own.
Did you experience any side effects? How long did they last? Did you take any other medications while your dosage was being adjusted to combat those side effects?
I experienced joint pain around the holidays during my first year on Palynziq. I worked closely with my clinic to manage my symptoms. As a patient, you should always ask your clinic for advice on managing side effects and work with them on any prescribed protocols.
When did those side effects go away? Did they ever?
I was very fortunate that the joint pain I experienced only lasted about ten days and did not come back. Every patient's experience is different, so what I experienced may be different from what others experience. You should always talk with your medical team about any concerns you may have about side effects.
What was your tolerance before Palynziq? What is your tolerance now?
Before Palynziq, my tolerance was about 350mg phe, or 7g of protein per day. And, I was on diet for most of my life. I currently eat about 70-80g protein a day!
Are you still on formula? Still doing diet management?
I am no longer on formula and do not have any medically prescribed dietary restrictions.
Did you take any other therapy while on Palynziq? Kuvan?
I am not on any other form of PKU therapy. I am only on Palynziq at this time.
How often did you have to do blood tests while on palynziq?
During the titration process, I took blood tests approximately every two weeks. Now that I have been stable on Palynziq for quite awhile, I take blood tests about once a month.
Would you recommend Palynziq to someone with PKU?
Palynziq is a very personal decision, and one you should discuss with your clinic and people close to you.
Is there anything else you want to share with someone who’s thinking of trying it?
For more of my story, watch my patient video!
Check out Sara's website!: https://prosperouspku.com/
