Orkambi and fat

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imported_Momto2

New member
I know there's been a lot of questions about Orkambi and how much fat you should eat with it. Vertex researchers have kindly shared feedback with me that "the data we have with ivacaftor and a controlled diet is with 20g of fat and greater; however, the guidance in the Phase 3 protocols was that LUM/IVA should be taken within 30 minutes of consuming fat-containing food such as a standard CF high-fat meal or snack. A snack may certainly contain less than 20g of fat. In addition, the example of foods in the Orkambi label contain 5-15 grams of fat, so 5 g should be adequate." The researcher also added that "5g of fat is likely to be OK, as LONG AS you also eat an additional 150 calories or so. Previous data suggests that absorption is influenced by having some fat and enough calories, about 200 in total."

Hope this helps folks!

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Allansarmy

Guest
Yes this helps thank you. My 19 y/o has a terrible appetite. Hoping Orkambi changes things. He argues with me a lot about taking it because he is simply 'not hungry'. I have to almost force him to drink at least whole milk with it. Maybe later his appetite will get better and this will not be an issue.
 
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nmw0615

New member
Thank you for this. When I spoke with someone at Vertex, all I was told was "A glass of whole milk is fine." Actually having a more solid number is extremely helpful. It will probably be easier to plan my next week's meals knowing if I don't hit 8g or more of fat, I'll still be okay.
 
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