Happy Saturday!
This week's Palynziq Spotlight is with Alina! I love how social media can bring people from all over the world together over a common cause.
Here's Alina:
I am Alina, 24 years old, live in the west of Germany and I have classical PKU!
How long have you been on Palynziq?
I am on PALYNZIQ since September 2nd 2021, so about 4 months now Were you nervous about starting Palynziq? Did you have any hesitancy towards staring your Palynziq journey?
I was very nervous about starting PALYNZIQ as my clinic told me for almost 3 years that they don't want to prescribe it because of the possible heavy side effects. For me, as I am an overthinker, it always sounded like I was definitely going to have an anaphylactic shock. Was it challenging to get insurance or co pay insurance coverage for Palynziq? How was that part of the journey for you?
In Germany, we have general health insurance, so there was no problem of getting the costs covered. As it was not possible for me to stay within the correct range of levels (<600umol/l / <10mg/dl), I qualified for PALYNZIQ. In Germany, you just have to pay 10€ per pack of injections, but as I am a student and don't really earn money, I was able to show my income to my insurance and don't have to pay this money as well. They once thought that I don't earn enough money to live, so I had to proof that I am not living under a bridge 🤣 Walk me through your first day taking an injection, what did that look like?
On my first day of PALYNZIQ, I brought my boyfriend, who observes me after the injections, and we met with my Biomarin Fieldnurse in front of the hospital. When we arrived and entered the room, my doctor told me about possible reactions again, how it will be going and how I am going to inject. We also talked about my upcoming Corona vaccine and decided to move the second 2,5mg injection a day earlier so that my body doesn't have to work with two things at the same day. After that I did the injection, where my field nurse and doctor helped me with injecting in my tummy. I already did the first one on my own. After that I had to go to the laboratory and have my blood taken as I always have to do when I am at the hospital. Then we waited the rest of the hour after the injection, my doctor always came to check on my but I always had my field nurse by my side. After that we went 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?
My first side effects came after the fifth 2.5mg injection, where the area where I injected in got red. After that all of these areas got red and in the beginning it took about one week until they were gone. The areas on my legs even took about 2 weeks and for one area it also took more than 4 weeks. Nevertheless, I, luckily, didn't get any other side effects by now. At this point, I don't get any red areas anymore, just on my legs for like half a day, sometimes a day. I definitely have to take pre medication as you have to do. Lora in morning and evening and Famotidin 30mins before eating in the morning. They both work anti allergic. When did those side effects go away? Did they ever? Before PALYNZIQ, I was allowed to eat about 10g protein (which I wasn't really able to do) and now I am on 40g protein daily. For a short period of time, I was allowed to eat 50g protein, but we still have to figure out how my levels went up again as I had a cold for like 4 weeks in that time.
What was your tolerance before Palynziq? What is your tolerance now? I am still on my formula, I take the RTD Glytactin Lite 15. Before PALYNZIQ, I took it three times daily, now I just have to take it twice.
Are you still on formula? Still doing diet management?
Sadly, we wanted to have me taking Kuvan, but my mutation responds to it with 0%, so I didn't get any other medication before.
Did you take any other therapy while on Palynziq? Kuvan?
Here in Germany, you would have to stop PALYNZIQ when you get pregnant or want to get pregnant. As there is not enough research, it is not allowed yet. How often did you have to do blood tests while on Palynziq?
Before PALYNZIQ, I took my blood once a month, now I do it once a week. I take one sample that I send to the clinic and one to the laboratory that Biomarin works with. That safed us when the one I sent to the clinic got lost before Christmas, as we still got the level from this week. Would you recommend palynziq to someone with PKU? I would recommend PALYNZIQ to others, definitely. Nevertheless, I have to say that you need to be kind of organized because you have to really take your medication, inject at the same time every day (it is okay if sometimes it's earlier or later). Also, I suffer from a lot of anxiety with it. As my doctor told me how 'dangerous' it is, I am still afraid of getting an anaphylactic shock, even though everything is going well since 4 months. Is there anything else you want to share with someone who’s thinking of trying it?
I would like to tell anyone who is interested in taking PALYNZIQ, to try and ask as many different people, who are already taking it, about their experiences. I didn't have that many side effects, mostly my anxiety, but I know a person who is also mentored by the same field nurse, who had rashes and joint pain and had to take cortisone multiple times because it was that bad. People shouldn't rely on just one experience, but ask multiple people to get a good feeling about it. You never know how your body will react. Luckily, we have the internet now where a lot of people share their story. Moreover, I am a fan of rather asking the field nurse or Doctor once more than not asking because I like being on the safe side. PALYNZIQ is a great opportunity and I am really thankful for it, but I definitely have to say that if I wouldn't see any results right now, I probably would still be very anxious. Until I got the first message that I was allowed to increase my protein, I was really struggling because of my mental health and anxiety. It was not possible for me to see the positive side.
