This topic contains 4 replies, has 4 voices, and was last updated by  Ziv gudes 3 months, 3 weeks ago.

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  • #11847
     Tré LaRosa 
    Keymaster

    Symdeko is safer than Orkambi and has less adverse effects, but other than that, it didn’t have much better therapeutic effects. On this topic, I want to discuss experiences on Symdeko.

    1. Are you on Symdeko? How long?
    2. Were you on Symdeko then came off? When was that?
    3. What is your overall experience on it?
    4. What is your hope with next-gen modulators?

  • #12043
     Rachel Rone 
    Participant

    I was on Orkambi for 2.5 years. It helped me gain weight and stay stable, but the shortness of breath was tough. I got on Symdeko, and in the first 3 months my lung function increased 8%, and I have felt amazing in the 10 months I’ve been on it. Only 1 exacerbation! It truly has felt life changing for me, and my doctor feels the modulators will help me live for a long time to come.

    • #12055
       Luisa Palazola 
      Keymaster

      @roner13 Because of my gene mutations, I was never eligible for Orkambi. But, I did do the trial for Symdeko (and was on the actual study drug) and that medicine was incredible and my fev1 shot up 10%. Unfortunately, my cohort of the study was terminated early (there wasn’t enough information to support continuation with my mutation group) so I was VERY bummed, and the 10& Fev1 dropped back to my baseline. It’s certainly life changing. However, have you heard about the triple combination therapy? THAT is going to be a game changer for so many people.

  • #12048
     Ziv gudes 
    Participant

    i am with Orkambi for 3 years. my doctor want me to replace it with Symdeko because the interaction between medicines ( anti fungal medicine ) and you are saying that symdeko is safer. why? i know there is less side effects than with the orkambi (that could lead to FLU symptoms/shortness of breath/whizzing) but i get over it and never had the experience to feel that.. the liver enzymes its the same thing about the symdeko like the orkambi.. so … whats the difference? (except the interaction between medicines)

    • #12056
       Ziv gudes 
      Participant

      Luisa Palazola i am sorry for you. really. thats not ok that you were on the drug trial and your FEV1 increased 10% and they take it from you (the same increase about orkambi by the way) . and yes. i heard about the Triple Combination. i not really sure that i understand it correctly if this is a New Drug that has succeed at the 1st trial on human. or this is something else with 3 drugs combination.
      my doctor has said that the VX-659 it will be T-H-E D-R-U-G of all. FEV1 increasing closely to 17 Even 20% maybe… something Huge. she said that it will be in the market year and half – 2 years from now.

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