Living with PKU: How has Palynziq 20mg/ml Inj, 1ml helped you manage phenylalanine levels?
Since PKU is a difficult and nuanced condition to manage, I'm wondering if anyone on the forum has been on Palynziq for a while. How has it affected your life?
I've been on it for a few months and have noticed some interesting changes in my overall health. I'm sure there are others with various kinds of experience. What do you think are the best practices to use when taking Palynziq?
I've seen a lot of information about how Palynziq works, but what does the injection process feel like? Is it manageable for you to do it yourself? How often do you have to do it, and when did you start feeling the benefits? Have you lost any weight since starting this medication?
The damage you get from phenylalanine or from the injections themselves is going to linger. So it's better to do it right away. I know a lot of people are skeptical about medication and I'd love to know if people have improved their health and diet.
Living with PKU: How has Palynziq 20mg/ml Inj, 1ml helped you manage phenylalanine levels?
Since PKU is a difficult and nuanced condition to manage, I'm wondering if anyone on the forum has been on Palynziq for a while. How has it affected your life?
I've been on it for a few months and have noticed some interesting changes in my overall health. I'm sure there are others with various kinds of experience. What do you think are the best practices to use when taking Palynziq?
I've seen a lot of information about how Palynziq works, but what does the injection process feel like? Is it manageable for you to do it yourself? How often do you have to do it, and when did you start feeling the benefits? Have you lost any weight since starting this medication?
The damage you get from phenylalanine or from the injections themselves is going to linger. So it's better to do it right away. I know a lot of people are skeptical about medication and I'd love to know if people have improved their health and diet.
Comments (10)
I've heard some people experience anxiety issues, is that true?
I've been on Palynziq for about 6 months and I have felt fatigue for the first few weeks, but it went away. I'm glad I started taking it. My doctor wanted me to lower my phenylalanine levels and I have achieved that. Its a good trade off for reducing phenylalanine.
How often do you inject it? I've heard it's once a day, but I'm not sure.
Palynziq has been a game-changer for me. I've been on it for about a year now, and my phenylalanine levels have dropped significantly. The injection process is a bit of a hassle, but it's worth it for the results. I do it myself, and it's become pretty routine.
I've never had any injection problems with Palynziq. Its been pretty painless and its not the big deal I thought it would be. For the first few injections they are painful, but after that its not a problem. It's a bit tough to remember to do it every day, but it's definitely worth it for the control over my phenylalanine levels. I've lost around 10 lbs since starting this medication
If you're experiencing side effects, definitely talk to your doctor. They might be able to adjust your dose or prescribe something to help. But yes, I had joint pain for a week and I asked my doctor and he said it could be a side effect and I had to wait it out. It went away after a while.
I don't get a reaction at the injection site. I was really worried about the reaction part, but I'm fine with that. I would recommend getting a different site of injection if you notice a reaction. My doctor recommended this and it helped.
I started Palynziq a few months ago, and while it's helped with my phenylalanine levels, I've experienced some side effects like joint pain and upset stomach. I'm hoping these will go away with time. Anyone else experience this?
I've been on Palynziq for about 3 months and it's a bit of a hassle but I've noticed that it actually helps with the PKU. I've had no side effects, so I would recommend this to anyone else on the fence. My doctor recommended it to me and I am glad I listened.
I've been on Palynziq for a few months and have noticed some hair loss. Has anyone else experienced this? It's been frustrating, to say the least.