caret icon Back to all discussions

Trikafta (Kaftrio) causing Bad Memory Loss?

Hi, I have been on Trikafta from June 2021.

My lung function has went up 20%, and I generally feel a lot better. However my memory is starting to get really affected. I’m forgetting having conversations with people, agreeing on meeting up, and forgetting how to get to places while driving. It’s really getting to me now as I feel so stupid when I just can’t remember.

Has anyone else experienced bad memory loss?

If so did you stop Trikafta or lower the dose and did it help?

  1. Hi @Ruth! I'm so glad to hear that Trikafta has helped your overall health; that's unfortunate that it's affecting your memory, though. Have you tried asking your CF team about it? Memory loss isn't something that I have heard of being a side-effect of Trikafta, but every individual's response to medications is different. I hope your doctors can shed some light on this. -Moriah Frisbie (Team member)

    1. To be honest, it sounds similar to me and I realised it was the overwhelming sense of finally having the closest thing to a cure. Try meditating to see what happens. It might be hard to sit still at first but work on doing 10 minute sessions to see how it makes you feel. Also just remember the changes it's making on your body. Changes that your body isn't used to and maybe your body just needs to adjust. If meditation doesn't help then I'd be a little worried.

      1. Same here 😔 bad memory loss on it. It's definitely the medication because I had a little break off it and it started improving but I know I can't be having these breaks off it either can't win really. X

        1. I had confusion, brain fog, memory problems as well . Had been on for a year of Trikafta. Went off for 4 weeks every improved, other side effects ( itching, headaches) went away as well. I just restarted on December 24, 2022. so we’ll see what happens.

          1. I hope you have a better outcome this time around. Not sure if you read this story by one of our patient leaders, I think it will resonate. Good luck and keep us posted. Warmly, Lynne (team member)

        Please read our rules before posting.