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Trikafta/Kaftrio 4 Years Evaluation: It Helps the Lungs but Hurts the Brain
Some of you might remember me. I am Paul (1963), married to Debbie, we are from the Netherlands. My body has Cystic Fibrosis (delta f508/r553x). I have posted regularly on the forum since 2019. In May of 2022, I posted about using Trikafta for 9 months[1]. It was a very positive review. My lung function went up from 20 to 25% FEV1, there was no more coughing, I had lots of energy and only mild side effects.
At least, that’s what I thought then. Now I know more and better. Using Trikafta launched me (and my wife Debbie) into a psychological and physical nightmare that lasted until recently. I got me into Mania, Anxiety, Depression and OCD. Finally, after four years, Morphine got me somehow got me back to normal again.
I documented this process in a Tale (nr. 47) you can download the pdf safely and for free from our webside here: https://www.parkinsjordaans.nl/downloads/47_For_years_on_Trikafta_Kaftrio_Helping_the-Lungs_but_Hurting_the%20Brain.pdf
I hope this information will help PwCF[2] planning to start with Trikafta to make a well balanced and informed choice. And that it will help PwCF on these drugs, who are experiencing these severe mental side effects, to better understand what is happening to them.
Please feel free to comment on my Tale on this forum or my email: [email protected]
Cheers,
Paul
[1] https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-kaftrio-9-months-evaluation/#post-20089
[2] People with Cystic Fibrosis, or parents of children with it. Currently in The Netherlands, children from the age of 2 years old already can get Trikafta.
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5 Replies
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Thank you, Paul for your contributions here. Everyone is different and there are those who I’m sure, suffered through many similar side effects that you did.
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I am sorry the link does not seem to work correctly on this website.
Go to our website
https://www.parkinsjordaans.nl/paul_debbie.php
and click on the story nr. 47.
or contact me on
then I will send the file to you completely for free.
Cheers, Paul
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Hey Paul, thanks again for sharing! How’s your week going?
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Hi Kevin, Thx for asking. I am doing fine.thanx to the morfine. My fev1 went up from 17% to 24% in one month. Mental nightmare from Trikafta completely gone. Enjoy being my self again.
How are you?
Cheers, also from Debbie,
Paul
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Great to hear! I am doing well. Looking forward to summer weather!
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