This week's Spotlight is with Bobby! We connected through my PKU instagram.
Check out his interview below:
How long have you been on Palynziq?
I started 10/28/2019
Were you nervous about starting Palynziq? Did you have any hesitancy towards staring your Palynziq journey?
Yes I was absolutely nervous and hesitant! I hate having to get shots or give blood samples or anything like that!
Was it challenging to get insurance or co pay insurance coverage for Palynziq? How was that part of the journey for you?
It took 3 attempts before I finally got insurance approval. It took a lot of correspondence between my Dr, Biomarin rep, and the insurance company before the ball got rolling.
Walk me through your first day taking an injection, what did that look like?
Woke up in the hotel (my clinic is 5-6 hours away from my house), I downed a formula shake (glytactin rtd 15 chocolate) and made my way to my clinic at UTSW in Fort Worth. Pretty sure I triple and quadruple checked to make sure I had all my supplies with me because I’m notorious for forgetting stuff. Chatted with the nurse as I got called back. Blood pressure was through the roof due to being anxious about the shot. Calmed down a bit and took my pre meds then. Waited a bit and spoke with my Dr about concerns again. He stepped out and said he’d be back in a couple minutes. Within the next 2-3 minutes the Dr. came back in and told me it was time. I protested that it hadn’t been 30 minutes since I’d taken my premeds but was told it would be ok, I was in a perfect place for any possible reaction as it was. I placed all my things out on the placement paper thing that comes with the kit. Lifted my shirt, cleaned the area on my left side of stomach, and did it.
I was astonished that I never even felt the needle go in! The injection itself was done before I even realized it was, and it was great!
The Dr came in a few minutes later and we chatted a bit more. I think I hung out for about 30 minutes after the injection to make sure there wouldn’t be any crazy reactions.
After I left, I went and got some chick fil a to snack on for the drive back home.
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 only experienced one small side effect and that was joint pain localized to my elbow when I jumped up to the 20mg daily injections. I treated with Advil as it wasn’t terrible, but it was certainly inconvenient. Dosage was not changed. Joint pain only lasted about 2 weeks.
When did those side effects go away? Did they ever?
Only lasted 2 weeks
What was your tolerance before Palynziq? What is your tolerance now?
Tolerance before Palynziq: was 20g protein/day, but that was on Kuvan. Prior to Kuvan, I don’t know what my tolerance was because I was off diet from the age of 18, until starting Kuvan. Tolerance now: unlimited! No formula, I average between 150-165g natural protein/day.
Did you take any other therapy while on Palynziq? Kuvan?
At the start of Palynziq, I was currently on Kuvan. I was told to keep on Kuvan until I responded to Palynziq. As soon as I responded, I was told to quit Kuvan.
How often did you have to do blood tests while on Palynziq?
When I started it was 1 test every month. When I started responding, it went to every week to assess my tolerance. Now I do blood tests about once every other month.
Would you recommend Palynziq to someone with PKU?
Yes I would absolutely recommend it, though I try to make sure that everyone considering it knows that not everyone will respond as quickly as I did. Some take up to 2 years or more to respond.
Is there anything else you want to share with someone who’s thinking of trying it?
Really just do as much research as you can to get as much information as possible. Utilize your Biomarin rep! Mine is amazing and really helped put me at ease with the whole process. Utilize Facebook groups, there’s a couple specific to people on Palynziq, searching enough you can find many others on Instagram as well.
At the end of the day, weigh the pros and cons… for me it was worth the risk, for others it’s not.
