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 

Pku treatments throughout the years and new treatment options

Back then when I was little the only form of treatment was diet for life. Which has always been challenging. I was told by my father that low protein food diet exist ethier. They had to make my food from scratch! Which sounds like my parents had it rough back then to take care of me. A little while later they developed low protein foods thru a company called cambrooke. Which was the first company to sell low protein food. Unfortunely I was never lucky to have food or forumla ever covered by insurance. So the cost of staying on treatment alone was expensive. I believe by 2010 a company called biomarin made a drug called kuvan! At first my family and I werent sure about it. And always worried about what could happen if things didnt work right! But eventually I decided to try it. I was a responder. I was on kuvan for years. But wasnt aware how little it worked for me. I always wondered why my levels were so high if I even tried to follow diet. It wasnt til palyinzq was approved. And out there on the market for people to try. That I thought about trying it. I was told by my clinic that kuvan barely works for me. Which is unfortunate that I didnt know this early and wasted years on this drug. But when I found out i was pregnant I stayed on kuvan. Which was a good decision. It helped my levels stay low and well it didnt do nearly enough work like my son did. But I'm happy that I decided to try palyinzq so far I'm still waiting for good results but I know it takes time. But I think its amazing how many options out there to try to manage pku better. Alot of people thought that palyinzq is to risky. But honestly the way i see it is life is like gambeling if you dont take risks you'll never know if it was meant for you. Especially having pku. Until someone has walked in the shoes of someone with this metabolic disorder then they dont understand the risks im willing to take to better my self and life quality. So why be close minded?? You'll never know until you take risks 

The first week of 20mg dosage

I started my first 20mg dosage the beginning of this week. Im not ganna lie I was very nervous. Its alot more then my body is use to handling. But this is it. This is the dosage ive been told that will show  significant drop in phe levels. This the dosage may allow me to be restricted free. I cant imagine being able to have more options out there. It would make life easier. Less of a headache. It would make planning for traveling or visiting family easier. I would finally be able to eat what everyone else is eating. Of course it will take time to work up to that point. Ive been told by pku friends that are on the shots that they live unrestricted diet. Which is alot harder to maintain why you may ask? Because people like us always have to watch protein intake and eat low amounts. Which has always been hard. But i cant imagine what it would be like to not have to do that. To be able eat foods and not to be considered to be cheating on your diet. Knowing that it will hurt you later. It reminds me that I want explore that part of life. Even though these 20mg shots have been hard to get use to and alot more side effects it will be worth it in the end. And I know this is what I need a more balanced out life. A healthy me.To be the best wife,mom, and teacher. 

I cant wait to see where this adventure takes me. 

Stay tune 

The first week of 20mg dosage

I started my first 20mg dosage the beginning of this week. Im not ganna lie I was very nervous. Its alot more then my body is use to handling. But this is it. This is the dosage ive been told that will show  significant drop in phe levels. This the dosage may allow me to be restricted free. I cant imagine being able to have more options out there. It would make life easier. Less of a headache. It would make planning for traveling or visiting family easier. I would finally be able to eat what everyone else is eating. Of course it will take time to work up to that point. Ive been told by pku friends that are on the shots that they live unrestricted diet. Which is alot harder to maintain why you may ask? Because people like us always have to watch protein intake and eat low amounts. Which has always been hard. But i cant imagine what it would be like to not have to do that. To be able eat foods and considered to be cheating on your diet. Knowing that it will hurt you later. It reminds me that I want explore that part of life. Even though these 20mg shots have been hard to get use to and alot more side effects it will be worth it in the end. And I know this is what I need a more balanced out life. A healthy me.To be the best wife,mom, and teacher. 

I cant wait to see where this adventure takes me. 

Stay tune