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  • How do you know it’s time for a tune up on Trikafta?

    Posted by luisa-palazola on September 23, 2022 at 11:22 am

    I’ve been on Trikafta for three years now and I am nearing four years IV free. Since being on Trikafta, I’ve had various courses of oral antibiotics but haven’t had a full-blown exacerbation. I am currently going on week two of moderate chest congestion + orals. I am feeling better, but not “normal.” It’s strange, because pre-Trikafta, I would know when it was time for IV’s. Nowadays, it’s a bit confusing because I certainly don’t feel like I did before Trikafta, but I also don’t feel like my Trikafta baseline. 

    So, my question for you is:

    1. Have you been on IV’s since Trikafta?
    2. If so, how did you decide it was time to go on IVs?
    jenny-livingston replied 1 year, 9 months ago 1 Member · 1 Reply
  • 1 Reply
  • jenny-livingston

    October 15, 2022 at 2:10 pm

    Luisa, I oftentimes wonder this myself. Since starting Trikafta, I’ve been able to clear up any issues (including a minor bout of pneumonia) with oral antibiotics. It’s been almost 3 years since my last hospital admission. I know that I’ll need IV antibiotics at some point in the future, but I don’t know if I’ll be able to recognize that need right away. My body has changed so much, and I’m not longer as closely attuned to what it is telling me. You posted this a while ago… how are you feeling now?

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