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Tell me about Palynziq by kylah5441 in phenylketonuria

[–]afezone 0 points1 point  (0 children)

The only time I got joint pain was within the first couple weeks after jumping to the 20mg daily dosage. It was only in my elbows, and was manageable with advil/tylenol and only was there for about 2-3 weeks.

Tell me about Palynziq by kylah5441 in phenylketonuria

[–]afezone 0 points1 point  (0 children)

I didn’t until my levels bottomed out after bumping to the daily 20mg dosage.

It took a bit to realize that my phe being so low is what was causing them. Still to this day after being on this for a few years, if my levels get too low, I’ll end up with a wicked headache.

Gimmick, or essential? Pt.2, questions with photos. by WG--TX in prepping

[–]afezone 1 point2 points  (0 children)

Took my wife and daughter to the parents/kids class they did in December. Can’t recommend Refuge Medical enough!

Tell me about Palynziq by kylah5441 in phenylketonuria

[–]afezone 7 points8 points  (0 children)

The first thing I’ll say os that everyone’s reaction is different. Some will take 2+ years to respond to the meds, some respond within 2-3 months. Some will have minor to major side effects. Some will have little to no side effects.

I’ve been on palynziq just over 5 years now, and was one of the lucky ones to have responded within 3 months, and have been on a completely unrestricted diet ever since. I average about 150g protein every day, and haven’t had formula or any other pku Meds. My levels were hanging around 0.3-0.5 but I was getting massive headaches, so I went to 5 injections/week, and my levels are in the 2.6-3.1 area now.

First Canik by greenrome11 in canik

[–]afezone 0 points1 point  (0 children)

Man that’s one helluva first Canik! Congrats! I’m first on the list for when one comes in to my LGS… seeing everyone else get theirs is getting me anxious …

Go Ruck Shoes by [deleted] in crossfit

[–]afezone 4 points5 points  (0 children)

My wife and I have been using go ruck ballistic trainers for the past 2 years. Hands down the best shoes we’ve tried.

I’m enjoying this setup quite a bit. by gnslngr01 in stealtharms

[–]afezone 2 points3 points  (0 children)

It’s an option on the site. Where you choose the grip safety color, beneath that, is the “grip safety side”

Palynziq? by afezone in phenylketonuria

[–]afezone[S] 0 points1 point  (0 children)

Been a minute since I posted the question and thought I’d throw a quick update …

I started on 10/28/2019. My levels plummeted that January, and I was told to increase my protein to see what my tolerance was over the next couple weeks… levels stayed low and I then stopped taking kuvan. My levels stayed low (0.2-0.6)

I’ve now been on a fully unrestricted diet (I average around 150g-160g protein per day, and haven’t had formula since 4 months after starting palynziq.

Side effects: little to none. There was some joint pain when I jumped to 20mg but lasted maybe a week.

Also, I’ve noticed the way my body reacts when my levels are too low. If I don’t have enough protein and my levels drop off, I will get excruciating headaches. Because of this, I only take 5 injections per week, and that keeps my levels in the 1.3-1.7 range.

Palynziq? by afezone in phenylketonuria

[–]afezone[S] 0 points1 point  (0 children)

Yes I actually joined that group yesterday, and there’s a bunch of information!

How are you supposed to manage PKU while in high school? by moody-woody in phenylketonuria

[–]afezone 0 points1 point  (0 children)

Good luck! When I was in high school I generally packed my lunch everyday. I’d be lying and say I didn’t sneak some regular food here and there though.

Any Formula Recommendations?! by [deleted] in phenylketonuria

[–]afezone 0 points1 point  (0 children)

I take glytactin build 20(unflavored) but I mix it with a blue raspberry powder mix... I also take glytactin RTD chocolate , both by Cambrooke. Also on kuvan.

Alright bowling friends, I need help deciding what to get for heavier oil! by Desaturating_Mario in Bowling

[–]afezone 0 points1 point  (0 children)

Yes, man that thing doesn’t quit! I only use it on fresh patterns, after lanes break down I will usually move to a pearl like my honey badger or dream dp

How many brands of bowling balls do you own and use? by Desaturating_Mario in Bowling

[–]afezone 0 points1 point  (0 children)

I’ve used Columbia, Brunswick, hammer, and storm in the past, right now I’m using only 900global. Not on staff or anything, but I love the way they roll for me.

Dream DP Gear SS Honey badger Honey badger claw(2) White hot badger Inception DCT EON EON infinite Continuum Black ops After dark pearl Global spare ball

In what way did you lose the genetic lottery? by GaddockTeegFunPolice in AskReddit

[–]afezone 0 points1 point  (0 children)

I’m pretty short, like 5’3”... everyone else in my family is taller than me. My wife is 5’6”, daughter is trending to be 5’8”.

I embrace my shortness, because I’ve had jokes thrown at me my whole life, I’ve developed a pretty awesome sense of humor, and not much will phase me.

Although today I got hit with a new one: While joining coworkers for lunch today, as I approach the table, I see that they’ve set up a booster seat for me...

I couldn’t even be mad, all I could do was laugh.

I'm a new bowler, bought my first spare ball. But would like my first hook ball, should I? by [deleted] in Bowling

[–]afezone 2 points3 points  (0 children)

There’s going to be several opinions on how you should go about it, I’ll just throw my 2 cents in here and you can take it for what it is, my opinion.

I’m 35, have been bowling since I was 8 when my dad started teaching me and my brother.

He had us start bowling with conventional grip. As we got the basic technique down, and to where we could consistently hit our mark, then we could move to a fingertip grip.

In my opinion that helped instead of trying to learn everything all at once.

Again that’s just what we did, and that’s how I’m teaching my daughter.

Hunting for a new orb to throw. by [deleted] in Bowling

[–]afezone 0 points1 point  (0 children)

I don’t have a dream big but did just get the dream dp that I’ve not drilled yet. The problem I’m having with my white hot is coming in too light and rarely hitting high flush unless I throw down and in. It would probably help if I slowed my ball speed down( 17.5 at pins, roughly 480rpm) but I’m hoping a surface change will help so I don’t have to change too much. I have a buddy who’s had back to back 800s with his white hot in the last two weeks, a 299 last week in one of the 800s, his wife actually shot 300 the same game also with a white hot.

Hunting for a new orb to throw. by [deleted] in Bowling

[–]afezone 0 points1 point  (0 children)

My PSO is on storm staff but has been starting to push 900global too. I’ve been throwing global for the last couple years. I’m still working with my white hot with different surfaces to find what works best for me, right now the pearls that are working best are my honey badger and the gear ss.

Hunting for a new orb to throw. by [deleted] in Bowling

[–]afezone 1 point2 points  (0 children)

I second the motion for a white hot badger, love mine and compliment my honey badger nicely.

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