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Thread: 2789+5g->a

  1. #11
    sdeuber
    Guest
    I have G551D and 2789+5G->A. I am on Kalydeco because of the G551D portion.

  2. #12
    I have not. But I will bring it up at his next appointment. He is doing the 2800mg daily dose of ibuprofen instead of the azithromycin 3 days a week. So far so good with that.
    Thank you

  3. #13
    There is a new doctor at the clinic that we met last month. He took the time to explain, in detail, to my son the importance of the medication and why they need to be taken in the order prescribed. Overall I felt much better at the end of the appointment. But Boston has been in the back of my mind. Only a couple hours away. Thank you

  4. #14
    I have 2789+5G->A and 1677delTA, both pretty rare mutations I'm 35 years old with 87% lung function. i do about 60 to 100 miles of bike riding per week and am thankful everyday I can be out on a bike. Crossing my fingers that Veritex can find a fix for us all. I would have loved to join in one of the trails but my work/family life is much to crazy these days.


  5. #15
    sdeuber
    Guest
    I have 2789+5G->A (how do ever come up with these cryptic names????) and G551D. It is my understanding that Kalydeco was initially for any mutation with G551D; that's how I am on it.
    Not too sure about the other mutations. The also approved it for two copies of the Delta F508. And recently:
    The U.S. Food and Drug Administration announced today it has approved Kalydeco™ to treat people ages 6 and older who have one of eight additional cystic fibrosis mutations.

    With the announcement today, Kalydeco is now approved for people with the following mutations: G551D, G178R, S549N, S549R, G551S, G1244E, S1251N, S1255P and G1349D.

    Not sure about 2789+5G->A

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