Patience’s is key!

It’s been a long time since I wrote on my blog and figured today would be the perfect day too! I’ve been on palynziq for about 7 months! Unfortunately I still haven’t responded yet due to some minor set backs. Which again was a bummer but I’m back stronger then ever with the goal in mind of lower phe levels and a normal diet. But what is normal any ways? 2020 really makes you question about the definition of normal. But here in the pku world what’s normal to us is a diet where we don’t have to watch so closely at how much protein we are allowed to eat. That meat, eggs, or cheese are absolute no no. But a normal diet to us would be able to eat at a family meal with out worrying about if you can eat it or not or going to a restaurant and only can eat the salads or the sides which is like the smallest corner of the menu. Which again is annoying. The pku diet gets old. Any one with pku can clearly agree! But hopefully palynziq will work for me and it won’t be an issue! The one thing I’ve learned about this experience is that patients is key! It takes up to 6 months to a year for my shots to finally work instead of my immune system fighting it. It may take time for it to work. But I know it will be worth it in the end. Sure it’s a bit discouraging that my friends who have been on it as long as me have had there levels drop and yet I’ve been pretty jealous but then I remind my self that it’s okay. I will get there. Every ones body and situation is different. It will happen soon. Keep your faith and keep doing your shots. And one day I may be surprised! Hopefully soon at least! 

Week 6 on 20mg

This week I still haven’t had any side effects! But this is also the first week I’m able to go back to work after being laid off for two months. So things are a little different and life is getting a bit busier now.  So adjusting my schedule will be a little hard. I usually like taking my shot at night. But with my new schedule I realized that it’s not a good idea. I’m usually pretty tired after a long day at work. So far I missed my shot twice this week. Which means I need to try to do my shots I the morning or at work. I know this schedule temporary So in the mean time I just need to figure out how to adjust to it.

Week 5 on palynziq

It’s been five weeks since I’ve been on 20mg. So far the side effects I’ve had is a rash and some itchiness. And a little bit fatigue. But I’m completely blessed to say that most of the side effects are gone. Now it’s just my body being okay with the shot. Hopefully I see good results soon.

Week 4

It’s been 4 weeks that I have been on 20mg and so far it’s been good. I did have a clinic appointment last week as well as a blood test. The appointment went well and I finally found out my results. My phe level was the same as last month which was a 15! It was pretty discouraging to hear that. But between my pku clinic and Biomarin team they keep encouraging me that i will see successful phe levels soon. It just depends when my body will accept the medicine!

Hopefully that will be soon!

3rd week on 20mg

I just finished my 3 week on palynziq! And to be honest I feel amazing compared to the beginning. I haven’t felt that way since I was pregnant when I got my levels down. For a long time I have dealt with Anxiety and depression. It was always a constant battle in my mind of things I stressed about and constantly down talking my self which is the depression talking. But I realized it wasn’t a genetic thing that I was worried about. It was due to pku. If you talk to anyone with pku they could tell you they deal with it as well! But since I feel better I don’t feel constantly stressed like an elephant sitting on my chests and it makes me feel that I can’t breath and with the constant negativity swirling around. Im actually a lot happier. I’m not irritable much any more. My husband thinks im a lot happier. Which people around you comstantly can tell if your feeling better. I’m just all around a better person. And I think these shots are working for me! Monday I will be taking a blood spot to send off so I will see what my results will be. Stay tuned hopefully I have positive news by then 😋

What happens when I miss my shot?

Some people have asked what would happen if i miss a shot. Which in the beginning didnt seem to have any effect on me. But now that im on 20mg its a big difference. Last night i missed a shot. By the time I remembered it. It was was already midnight which makes no sense to try to take my shot then. Because I dont wanna know what would happen if i took 2 in one day with out working up to it. Ive been really drained and a bit weak today. I didnt think I would have any side effects from missing that dosage. But for me it does. In a round about way I feel that its good when our bodies remind us what we need. 

Week 2 on 20mg

This week I have had better success! The side effects i had we're injection sight rashes, swelling/inflammatin in my hands, and lots of fatigue! Since the last time my dr and I spoke I was told i needed to take my injections earlier in the day. Which has been a challenge. Because of fatigue. I still have been doing them at night but have not missed a single dose! My husband has been my rock through whole whole journey so far! He reminds me to take my shot and even helps to inject certain areas. Which im so proud of him! He was great when he tried with me last week. Hopefully i. A few weeks we will know what my phe levels are! 

Stay tuned! Postivr he was going enjoy. If