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 

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 

10mg every day for a week

Last week I had to inject my self 10mg shots everyday! My body seems to be getting use to it. My side effects have been a lot less this time around. All I get is rashes now. I havent had joint pain in a week and a half. Its a pretty good feeling to have! On March 30th I had my drs app and my last 10mg injection. The dr wanted my phe levels to be check to see if my body responds to 10mg or if I need to up it to 20mg! Im currently still wanting on results! Stay tuned ❤

10mg injection 3x for one week

As some of you know ive been on steriods for joint pain. Which i take as needed now. This week i had to take 10mg 3 times this week. The first injection went great. I didnt see any reactions til the next day when I couldnt get out of bed with out the help of my husband. Which I'm truly thank ful for. As the week went on it got a little easier. Next week I will be doing my injections daily! 

Stay tuned! 😃

10mg of palynziq

On March 3rd I started my 10mg dosage of palyinzq! The only side effects ive had is reaction from the site and joint pain. I started taking steriods for inflammatory in my joints. Because my joints got so bad I can hardly walk. Since I started them i felt alot better. So far ive done 3 10mg injections. My side effects arent as bad as they were in the beginning. My rashes are way smaller than the beginning. Ive even got to the point that it takes me a few seconds to inject my self. Because I'm so use to the needle now that i dont even feel it. Ive been extremely lucky that I haven't had any serve allergic reactions. This week I'll be taking 3 dosages of 10mg. Which is alot compared to what ive took so far. But i have to admit that im glad that we started off with the injections slowly. Because i honestly believe that if we didn't start out slow my body would have had a serious reaction. I'm praying for more success as each week I progress. March 30th is my next appointment at Vanderbilt. We will see if they shots are working by then! 

Palyinzq update!

So far ive already had three injections. The side effects have been different every time. But thankfully nothing so severe I need to use my epi pen and take a trip to the er. Hopefully it  stays that way! The first injection i had only joint pains. But it wasnt just regular joint pain. It was the type that made it hard to get out of bed! The second injection I didnt have any joint pain but I had a rash from the site area where I injected at. But nothing to unbearable to handle. By my third injection immediately got a rash. It was pretty big. I got it within 30 minutes of injectioning ny self. Then later on I experienced terrible nausea. Which led to vomiting anything I try to ingest. Not only did I have that but really bad watery diarrhea Which seem to never end. I kept praying that it would stop. Because it kept me up all night. And even though it did. I still went into work the next day. Even though I was physically exhausted. By then it had stopped on its own. This week will be my fourth injection. Which im nervous about. Because my body reacts differently each time! I pray that my body will not give me hell for it this time around. 

Palyinzq part 1 Journey

January 27th was my first injection it made me really nervous. But I knew I was in good hands at the clinic. I knew what the symptoms were for anaphylaxis reaction. That was the only fear I had. When I did my first injection I was pretty surprised on how painless it was it felt like I was just getting my blood done although I wasn't even worried about the pain because I and not afraid of needles and have been through childbirth and nothing could ever compare to the amount of pain that I have felt the day my son was born but I can say that it was worth it every second. Although I wasn't perfect with my first injection I still had a lot to improve on I felt okay after my injection about an hour or so later after I came home from the clinic I started getting severe joint pain meds in the left leg and then it was both legs it made it hard for me to walk without being in such pain but I knew that I had to work through this because it was part of it I made sure that every day I would take my pre-meds. And the only other side effect I've had was a little bit of stomach pain but I have not had any rashes or anything by the injection area which is the most common thing for most people that take the injections my next injection will be tomorrow and a bio Marine nurse is coming by my house to help me did my first injection by myself at home I'm not so nervous anymore because I know that I got this and I've got all the love and support from family friends and of course my husband I'll keep you posted❤

The count day to clinic day!!

Last week I got the best news ive been waiting for. Palyinzq was finally approved up to a year thru my health insurance. Which im completely shocked and excited for it. The question is what is the next step? Well I had to make an appointment for my first injection which is January 27th. I'm super nervous. Ive been praying that it will work and I wont have an allergic reaction. They also advise me to get all my premeds which is all over the counter that helps side effects. Although im not sure what they are yet. Im hoping to hear by monday. However I did tell my both of my bosses a bit about palyinzq and the epi pen. Which its kinda hard to explain when someone doesnt know I have pku but i feel like its very very necessary to let them know because i have to carry an epi pen. 

Anyways I will keep y'all updated on this new journey! Until next time ❤

The waiting game!

Its been about 5 weeks since i had a talk with my clinic about starting palyinzq. Within the same visit I also did my safety video. I know your probably wondering for what? Right? Well let me explain. Palyinzq requires you to carry a epipen on you at all times. It teaches to look for the signs of anaphylactic shock. The more knowledge you have for the signs the more likely you'll be okay if you actucally get to that point! I know it sounds scary huh? But my philosophy is... Life is a gamble and sometimes you need to take risks in order to win right? So why not? Im more than ready start in the right direction again. Now that i know what its like to have good levels and to feel good. Its all I want for my self anf the sake of being a wife mom and teacher. It would make things so much easier a clear head is better then always being foggy. As I sit here and wait for insurance to okay everything ive experinced so much effects from having high levels I realize that no one will truly understand what it feels like unless they have it. So like most things insurance takes there sweet time to approve anything. Mind you ive been off kuvan for a month. Which barely worked but at least it was something. Its just been fustrading to have to wait and constantly feeling awful. But I'm trying to stay positive that this is the week I will get to start it 🙏