Borrrinnnng!! (Day 4 on orkambi)


New member
I could sum up my Orkambi experience so far in one word: Boring. Nothing good or bad really has happened while on this drug. I am of the same opinion that someone else had, when he/she said that they were actually a little concerned that something bad WASN'T happening. Does that mean that it's not gonna come through and clean house and make changes? I'm kind of leaning towards that opinion. The only thing that i attribute to Orkambi is a little bit of an upset stomach. I've had it since Sunday morning. (day 2) Again, it's only upset a little, it feels slightly like when i don't take enough enzymes, although when that happens, the magnitude and intensity of the symptoms is MUCH worse than what i am experiencing. This is just enough for me to notice.

My Food Routine:

Initially i was going to change up my meals completely to try to adhere closer to this 'every 12 hours' nonsense, but then i realized that THAT would be nonsense. Normally i eat breakfast around 9:30, and dinner around 6-6:30. I was gonna try eating breakfast earlier and dinner later. And i realized i would have to change my breakfast completely, because my normal breakfast is only a bowl of cereal, which is barely 10g fat. So i threw that plan in the trash. Instead, i have a fat (pun intended!) snack as soon as i wake up, which is around 6am, then i can have my normal sized breakfast, at the normal time, and my normal dinner (which already has usually around 20g fat) at the normal time. It would be nice tho if they'd ship these pills with 10g fat pre-installed! That way we wouldn't have to track our fat and intentionally eat more than we normally would.

So far i see no change in my energy level, or any respiratory change.

Only on day 4, we'll see how things go from here.