Orkambi Success

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Brandon Justice

New member
I'm delta F508 homozygous, I'm 20 years old with an FEV1 of 89% and it's all thanks to Orkambi. I've been on the drug for 2 years through its clinical trial phase. Trust me everyone, it's a miracle. Diet and exercise and certain health and wellness products along with Orkambi is key to your success. Take a second to run past my blog brandoncysticfibrosis.wordpress.com I started it yesterday so folks who are interested can track my journey and know that Orkambi not only works, it blew away all of my expectations. My lung function has shot up 14 points in 2 years and this is after a steep down trend. The benefits are there as long as you put in the work I promise you. Please refer anyone who doesn't believe in this medication to this thread. Because I want everyone to see the same improvement I have!
 
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scanboyd

Member
Orkambi sounds like a great drug for us delta F508 folks but the cost from what I understand is some where around $259,000.00 a year. This is crazy. This will cause our insurance premiums to go out the roof. I thought Cayston was exp. but this is robbing folks financially without a gun. There is no way insurance companies can afford the cost. It will be passed along to the consumer. Insurance companies will stop insuring CF folks or employers will not hire you or family member that has a CF family member that they will be insuring, if they can? Got to better cost structure, realizing R&D is exp. for drugs but this is insane! - See more at: http://forum.cysticfibrosis.com/threads/144464-For-people-taking-Orkambi/page5#sthash.vUgUwzry.dpuf
 
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Rickengelage

New member
Hey,

Good to hear ur positive results with the drug.

With my lung function shot up 14 points, u mean 14% fev1 increase?

What was your lungfunction before you started orkambi?

And how long did it take to start feeling a positive difference?

Did u also go through that first "hell week" of tight chest and stuff like that?

Hope to hear from u.
 
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Brandon Justice

New member
@Rickengelage my Fev1 was 74% and to be perfectly honest, I didn't feel this "hell week". And ya know, the differences were subtle. So there wasn't a tipping point that I noticed. But I will tell you that.I went from being hospitalized every 96-9 months to now here I haven't seen the inside of a hospital room in 2 years. It's like the bugs I have don't have a super suitable environment to really grow anymore.
 
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