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What is your experience with CF modulators?
These days, many of us take a CF modulator. They can work wonders, but are not a cure.
Which modulator are you on, and is it working for you? Do you have any questions or experiences with modulators you want to share?
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2 Replies
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I am on Trikafta since 2021. Had to lower dose to 1 Orange pills a day (no seperate ivacaftor) because of severe mental side effects that lasted 4 years and mysteriously went away within a month after taking a small dose of oral morphine twice a day because of dyspnea.
I depend on the Trikafta completely (fev1 24%). When I forget to take the pill my airways stick together like glue within 12 hours. Then I have to take a double dose next day to breath again.
It is a great help for my lungs and with the morphine I block the terrible mental side effects it has.
Cheers, Paul
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Hi Paul! I’m so glad you found a modulator routine that works for you!
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