For those taking Orkambi....how has it impacted you?

[humphrey711]

Hi All,
I am the mother of an 8yr old with CF. She is DDF508 and is in a trial for Orkambi now. I know 100% she is on the drug but I don't know the dosage. Her health is great right now (knock on wood). She is gaining weight, her activity level is great, and no coughing at all. While I want to believe Orkambi is having an impact it could also be due to the fact that she is out of school and away from sick kids and is swimming every day.

I would love to hear what others are experiencing and how it is impacting your health.

Thanks!

 

[Allansarmy]

When you say she is on a trial. Does that mean she was on the DDF508 study prior to drug release earlier this month? If so how long has she been on the drug? Her results sound promising, expecially the no cough and gaining weight! Thats great!

 

[Aboveallislove]

Hey Allan,
the 6-11 trials is on going right now, so at eight she'd be on that one. Hope you are moving forward getting your precious son orcambi!

 

[occupyjapan]

I've been on it a week as of today and my response has been GREAT. Within a few hours of taking my first dose a week ago, my chest became super wet and rattly and I started coughing like crazy. I probably coughed up something like 1/2 a cup of really nasty, older looking gunk. Since then, my chest has felt great, my vital capacity is as high as it is when I'm on IV's, wayyyy less coughing, and when I do cough it's productive instead of hacking for minutes trying to get things up. Sputum is much thinner and is clear (not yellow or green or anything). I feel SO GOOD in general, I can't even believe it. My sinuses have also been draining on their own, which is something they never do, and my nose is super clear. I can finally smell/taste stuff again! Chest doesn't feel tight and weird in the morning anymore.

The only side effects I noticed were that for the first 4 or so days, it made my chest tight for a few hours after taking it. It seems like that's pretty much totally gone away.

 

[Ratatosk]

Exciting news! Have you noticed if you're as salty? Or if your tastes have changed? Digestive changes? Do you handle heat better? These were signs my friends child had with kalydeco

 

[Aboveallislove]

Exciting news! Have you noticed if you're as salty? Or if your tastes have changed? Digestive changes? Do you handle heat better? These were signs my friends child had with kalydeco

yes! I'd love to know that all as well. When dis starts I'm going to do daily photos of hands without water (still bad signs of the permanent splotches puffiness etc) and after 1 minute of water before and the. For the next several weeks to see if I can literally capture a change!

 

[rubyroselee]

Wow, that is fabulous news occupyjapan! I am excited to get to my clinic appointment this week to get my Rx as well. I will post my updates once I start.

 

[stephen]

It would be great to hear more positive responses like those from humphery711 and occupyjapan!


My experiences when starting Kalydeco 15 months ago were almost identical to occupyjapan’s. The response was so fast and dramatic that it took weeks before I was convinced that it really was due to the Kalydeco.

 

[humphrey711]

Hi All,
Sorry I haven't responded to my own thread. I was away for a few days. My daughter is a DDF508 and is in the 6-11 trial and has been on the meds since April. We know for sure she is on the meds so there is no placebo effect here. We won't know the results until October when the trial ends and I get to see results of her sweat tests. She has been really healthy this summer. She does the vest and sees a PT once a week for manual chest clearance. Her PT listens to her once a week and has said everything sounds clear. Any rattles appear to be easily coughed up. When she does the vest she appears to be coughing up mucus a little easier too. I really don't want to get my hopes up as these factors could be contributed to the fact that she is really active right now and it is summer. I am looking forward to October for those results. I can't wait!!!

 

[EmilysMomma]

So happy to hear of your results. I going to start tomorrow and I'm kind of nervous of the "first week" I've been hearing about. It sort of sounds to me like a "purge". My sinuses are terrible so I'm really looking forward to getting easy drainage and less sinus headaches. I see in your profile you're 31 also. Do you mind sharing your fev1?

 

[regina65]

I went to my clinic appointment today. I got all my orkambi paperwork done. My doc said Arkansas medicaid will not even think about paying until after the october meeting they are having. I also got put on the transplant list. My fev1 is only 30 now. I didnt think you could get a transplant with cepacia

 

[EmilysMomma]

I've been on it a week as of today and my response has been GREAT. Within a few hours of taking my first dose a week ago, my chest became super wet and rattly and I started coughing like crazy. I probably coughed up something like 1/2 a cup of really nasty, older looking gunk. Since then, my chest has felt great, my vital capacity is as high as it is when I'm on IV's, wayyyy less coughing, and when I do cough it's productive instead of hacking for minutes trying to get things up. Sputum is much thinner and is clear (not yellow or green or anything). I feel SO GOOD in general, I can't even believe it. My sinuses have also been draining on their own, which is something they never do, and my nose is super clear. I can finally smell/taste stuff again! Chest doesn't feel tight and weird in the morning anymore.

The only side effects I noticed were that for the first 4 or so days, it made my chest tight for a few hours after taking it. It seems like that's pretty much totally gone away.

i posted a reply to you last night it was on mobile and didn't know how to quote or tag you. It's about 2 posts ago ?

 

[rubyroselee]

EmilysMomma-

Let us know how your first day and week goes! I just got my doc to write the Rx yesterday, so hoping to obtain the drug soon. Also not looking forward to the first week, so I'll be interested to hear how it goes for you.