My last post was about my first day of Palynziq. I have now been on the treatment for 11 months and I have some real updates! The timeline is often an important question for people who are thinking about starting Palynziq. Some people take 5 months to respond, and some people take over 3 years, everyone is different. Your response to the drug is directly related to your immune system and how soon your body is willing to let down its defense mechanisms and let in the medicine.
Here's my story:
My first dose: March 1, 2023
At this point I was on 2.5mg of Palynziq once a week
March 1: 9 My starting blood level
I started 2.5mg twice a week
April: 8
I started 10mg once a week all the way up to once daily in April
May: 9
This is where I went up to 20mg once daily
June: 7
July: 4
July 11: 7
July 18: 7
July 25: 10
August 8: 4
August 15: 5
August 24: 5
September 5: 8
October 2: 7
October 20: 9
At this point they put me up to 20mg twice daily (2 injections)
November 12: 5
November 17: 4
After this blood draw, I was told I could start trying bites of new food items I had never had before like chicken, ham, cheese, to see what I like and what I could potentially add to my diet when I actually start responding. Check out my instagram @sam.pku for hilarious first food reaction videos!
November 24: 3
December 8: 1
After this result, I was told to drop my kuvan dosage from 14 pills to 10 pills.
December 15: 2
After this result, I was told to drop my kuvan dosage from 10 pills to 5 pills.
December 22: 3 (This level was taken while I was very sick and I had tried meat lasagna the day before. When your sick your body releases proteins to help heal itself, which can lead to higher blood levels for people with PKU).
After this result, I was told to stop taking kuvan completley.
I have been on kuvan for 8 years, and coming off of it still blows my mind. I will be doing a blood level in a week to see if my levels are still low after coming off kuvan.
Blood levels for healthy PKU patients should be between 2 and 6. You can see in August where my body got a little bit weaker and thought about receiving the medicine but then it decided to fight again. You can see that I went back to monthly blood tests after September 5th because I was discouraged about having a high level after having 3 lower ones. The two injections of 20mg of Palynziq twice daily is what really pushed me over the edge of responsiveness.
My side effects have been the following: heat rash on my face in the first couple months, redness around injection areas, and abdominal pain in December, all treated easily by premeds.
Next steps include adding protein, and taking away my medical formula (which I have been on for 28 years and can't imagine my life without).
This has been my journey so far: March 1-January 1. Check back for updates as I progress!
