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I've never liked cayston's packaging, but this is new, and seems to be worse than ever! they give no email address on their website, i'm not going to call them, and i'm also not going to send them a letter through snail mail. I just wanted to rant!! If anyone has any special connections to the...

Well i guess i'll chime in again. I;ve been on orkambi since Nov. 24.. so, ~6 weeks. So far no positive or negative change in how i feel. At all. A few GI symptoms the first couple days, but those went away, and could possibly have been a coincidence. It does seem to have lowered my blood...

I'm on my 11th day of orkambi, and so far, nothing extreme. I did note a few days ago that i think it's giving me slightly lower blood sugars in the morning. Averaging 96, which is down from the average of 108 i had before orkambi. I also think it has SLIGHTLY lowered my appetite, but i am not...

Well... lower when i wake up, but that's actually the most important thing to me. Last June (2014) i took an OGTT and i had elevated blood sugars. Since then, i've been checking my blood sugars semi-regularly (by that i mean, i started VERY regular, then when i learned my pattern, i tapered back...

I know, i wasnt being literal, and i genuinely feel bad for everyone who's had to go through tough effects from this drug. Hope no one takes offense from my comment. But in the big picture, if it takes a little bit of bad to bring about some good, i'm all for that.

Well i'm on day 4 of Orkambi, and so far i really have nothing to report. I have written some things here in the blog: http://forum.cysticfibrosis.com/blogs/4792-Fife The cliff notes of that blog post: No changes whatsoever besides a slightly upset stomach since Sunday. I'm dissappointed that...

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...

This is off the Orkambi subject, but can anybody tell me why my blog isnt listed as a member blog, and my blog post isnt listed in recent blog posts? i can see it in my profile, but nothing seems to show up in the regular member blogs section. On the orkambi subject, 4 hours into my third dose...

Well i'm officially on orkambi. As of two hours ago. Someone suggested a blog, so i started one, under my user name. And the blog title is just "Fife". Someone also asked if i'd link to it, but i dont know how. Sorry! So i am going to put more detailed analysis in there, but i'll post here a...

Well the time has finally arrived for me to start taking Orkambi. (warning, long post coming, and you'll get some boring details as well) I'll start this post off by saying that i took my first dose 50 minutes ago... (at 10:30am pacific) with plenty of fat. So far no reaction. (yes i know, only...

Got the shipment today of Orkambi. Expect a blog starting saturday. With the crapload of possible effects, i'm a bit nervous. Instead of the bottles of blue pills, like i've seen pictures of on the internet, it's a box with strips of two pills each, and they're pink. Anyone know why the...

I'll look in to the blogs, maybe i'll do that instead of G+. I've actually never even went to the blogs portion of this site. Didnt really know i could start one. I'll post overviews, or maybe condensed multi-day summaries in this thread also.

Good morning Everyone. So my office called and said i should get my first orkambi delivery on Wednesday. i have an E-appointment (I made that up, i dont really know what else to call it) thursday afternoon. A video conference with my doctors office giving me 'education' on orkambi. (tho i...

I just got the call from Vertex that ive been approved for Orkambi. Tho i'll probably receive it later this week, i wont be starting the medicine until Saturday the 23rd, because of plans that i dont feel like preemptively canceling. I'm 33, male, about 140lbs, last good FEV1 is about 78, so i'm...

Hey Saint, thanks for the info. Do you mind telling us what your FEV1 was (or a rough estimate) when you started orkambi?

Hi! Would you mind elaborating on that? How exactly does it help you hydration-wise? My biggest gripe about my situation right now is chronic dehydration. I've discovered (through my own research, no thanks to doctors) that I'm dehydrated a lot. A LOT! As well as have electrolyte imbalance...

I have GHPP, and i can vouch for the 'Not Being Able To Nail Down Any Clear Answers'... to ANYTHING. Sometimes i think GHPP doesnt know what they cover and what they dont, or that it changes. GHPP was explained to me in a very unclear way when i signed up. I thought that they were complete...

Yeah i did try those supplements. Once i figured out that it was electrolytes, and not just dehydration that was my problem, i started experimenting. I tried a bunch of things, including adding different electrolytes. Nothing made much of any difference for me except salt. In my post i referred...

Wow, interesting stuff. It seems like it doesn't do much for people whose lung functions are over like...70. Mines 75-80. I really don't care about it increasing my lung function, I was hoping for other improvements. The heat related issue that someone else mentioned that it fixed, that's what I...

Has anyone who is taking the drug noticed any change mentally? I ask this because, i dont have depression, but i can see a slow, gradual process heading that way. There's times where i'm just worn out, physically and mentally. With no motivation to do the things i need to do (whether that be...