• This topic has 3 replies, 2 voices, and was last updated 1 year ago by Rusty.
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    • #15931
      Jenny Livingston

      In order for them to be absorbed and work correctly, CFTR modulators need to be taken with fat. How much fat is up for debate. I was once told that 20 grams is ideal and for the first few years on Orkambi, I made sure I was getting that amount with each dose. More recently, a representative from Vertex told me that roughly 6 grams should be okay. Others have been told 12-16 grams by their healthcare providers or pharmacists. It seems that the answer varies depending on who’s asking/answering the question.

      These days, I don’t aim for a specific amount, I just make sure that I am indeed getting some fat. I take my morning dose of Trikafta with breakfast and my evening dose with a night time snack, usually consisting of cheese, peanut butter, whole milk, or something along those lines.

      Have you ever been told that you should be taking modulators with a specific amount of fat? If so, how much? What are your favorite modulator snacks?

    • #15938

      I have not been told to take a specific amount of fat, only that fat must be taken with the modulators. I love fat. I usually use cheese or full-fat Greek yogurt. I am always willing to add liberal amounts of butter or extra virgin olive oil to many things, especially vegetables. I have no limits to the amount of fat I am willing to consume so I feel I am safely meeting the “take with fat” amount required to get the most out of my Trikafta.

      • #15939
        Jenny Livingston

        @rusty you and I share the same philosophy here. I figure that whatever I’m eating will likely contain plenty of fat… that’s just how I eat! 🙂

        It’s been interesting to see and hear discussions about this though. Some people are very adamant about needing to consume a specific amount of fat with each dose, but that amount varies by person. I wonder… where did we get this information? Why is it not consistent across the board?

    • #15940

      I was not given specifics about just how much fat must be taken with each dose, only to take it with some fat. I just looked up the prescribing information from the Trikafta website and it says, “TRIKAFTA should be taken with fat-containing food. Examples of meals or snacks that contain fat are those prepared with butter or oils or those containing eggs, cheeses, nuts, whole milk, or meats [see Clinical Pharmacology (12.3)].”
      Officially, it seems, there is no official amount other than “some fat”. Yay fat!

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