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Thread: Trikafta Q&A, Experiences, etc.

  1. #21
    Hail2Pitt
    Guest
    Hi Chaos - I started taking it at the same time I was getting sick. Also, I know my doctors were able to get the drug on early access for patients who were very sick and in the hospital. So, Id think youd be able to start it on Monday, regardless of whether youre sick or not.

  2. #22
    Hail2Pitt thanks for letting me know!

  3. #23
    Junior Member
    Join Date
    Jan 2011
    Posts
    4
    Let me preface by saying that I only have 1 F508 mutation so was never able to take any other medications like Orkambi or Symdeko so this is my first experience with this type of medication. I started Trikafta exactly 1 week ago today and let me tell you... it really does work. I could tell within 2 days that it was working. On my 2nd day, I was coughing up a lot more mucus that was very thick and then on day 3 or 4, I just stopped coughing and I have more energy I feel like. I barely cough at all anymore and I can take much deeper breaths without any "crackles". And when I do cough up mucus, it is very thin and white and just looks like saliva almost, rather than thick green or yellow. I don't have very low PFT's and my lung function has luckily been steady for most of my life, but there is still lung damage and my cough was generally productive in bringing up thick mucus. Now that I am on Trikafta, I can look back and notice in just a week's time how much better I feel. I was so used to feeling fatigued all the time and bringing up thick mucus and coughing that it just became my "norm" of daily living. But now I have more energy and barely cough and can breath better. I hope that Trikafta will continue to work well long-term and prevent us CF'ers lung function from declining. I am really happy for the medication to be available after years of research
    Last edited by nickbrah; 12-07-2019 at 12:06 PM.

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