Kalydeco

[jbrandonAW]

I started kalydeco in march and I culture MRSA. It was gone the last time I had cultures done a month after starting. I dont think its bc of kalydeco though, i believe its from taking garlic.

 

[jbrandonAW]

I started kalydeco in march and I culture MRSA. It was gone the last time I had cultures done a month after starting. I dont think its bc of kalydeco though, i believe its from taking garlic.

 

[cabgodfrey]

Would love to hear more from those of you who are taking Kalydeco. We are living vicariously through you all as our daughter does not have G551D and is anxiously awaiting continued trials of VX809 with Kalydeco. In the meantime, we are very excited for those of you who are able to take Kalydeco and are anxious to hear how things are changing for you.

 

[echolaura]

hi cabgodfrey...my 18 yr old g551d daughter has been on for about 60 days. Prior to starting kalydeco, her function dropped from the 70's to the 40s over the course of about 2 years. She has less coughing now, claims to not feel any differently, and I am anxiously awaiting her second PFTs. Her FEV1 returned to 2.2 from 1.8 a month before that. Her response to the drug seems quite tame compared to the stories I have heard, but improvement is improvement, and I will happily take whatever she gets. I am anxious for news on her regarding whether or not she can stop taking Cayston, because I want it to work when she needs it to work. I understand she still will get exacerbations and I don't want to build resistance, the way she did with TOBI. Good luck...I hear there are some modifications being made today by Vertex in regards to the outcome of some phase 2 trials of 770/809