My Kaftrio Expirience | Cystic Fibrosis life

Since Symkevi came out I had waited for the day kaftrio became available because it was two years later for us in the uk and America were already showing incredible results. The excitement was real and the day I was told I’d be having it, I remember where I got the call and how excited I was. I’d just finished paddle boarding in Port Mellon, Cornwall. My nurse Laura called and it was the perfect end to an already good day.
I still won’t forget that feeling despite my issues with Kaftrio, it’s just not a one size fits all drug and that okay, it happens, the same way some react to antibiotics, the same as people having adverse reactions to jabs, we can’t all tolerate it but that’s why we keep developing and bringing out revised medications or adding labels to boxes to let people know these things can happen.
I’m happy for those it’s worked for and I hope it will continue to do so. But I also hope vertex address the issues and are focusing on kaftrio 2.0!

[@charliejarvis-banks689]

Hi, my daughter is on Kaftrio and thankfully it works but please don’t feel bad about it. Your life is your own, your body is your own and only you know your mind. Ignore the negative people… please stay strong. ❤

[@spider105a]

A very intelligent contribution. When i started Kaftrio, I worried that the drug would work for me and any side effects would be manageable. Thankfully I was one of the lucky ones. Although, i feel very sorry for you that Kaftrio didin't work for you and hope that that you have better luck with the drugs that are in the pipeline.

[@ginamiller8554]

Hi. I’m so sorry that Kaftrio caused such intense anxiety for you. I had a lot of anxiety when on the full dose -getting off the blue pill fixed things for me. (Ps- I am moderator on “ I support cystic fibrosis research” facebook page and needed to decline your request to post this video on that page as it’s not ‘about CF research’ per se). Regarding TB meds - I was on TB meds for MAC Lung at the same time as Trikafta, and did fine… perhaps you were on different meds than I? Good luck as you try to sort out what can help you 🙏

[@oldbaldguy6151]

I started Kaf/caly in 2020 and started having MH issues especially around winter. I have SAD but it's never been an issue, until now. I've had depression ever since, but lowering the dose has helped but I seem to have problems around people, I go through stages where I want everyone to bugger off and leave me be. My clinic has been supportive and believe it was the Kaftrrio also and the antidepressants seem to help throughout the year. I'm an oldie at 58, and it's heart breaking that young people might not be able to take this due to the issues they may have. Let's hope Vertex come up with a solution. Stay positive and stay strong.

[@lowenplas]

age definitely plays a part in my decision and I suppose because I was 28 when I started, I couldn’t imagine going another 20+ years feeling the way I did and felt I’d probably end it sooner, that’s how bad my head felt. my intrusive and irrational thoughts were so strong I was fearing they’d win… I’m so glad you’ve found a some what even ground with it, I haven’t given up on the idea completely but it would take some real turmoil for me to accept it, I think if I was last days, I’d try… but I can’t focus on my life and enjoying it long term with Kaftrio, it didn’t feel like there was an end to the side affects in sight.

[@100allycat]

I don’t have CF, but Pulmonary Fibrosis from my Lupus being undiagnosed so long. I was put on methotrexate, and essentially the same thing happened. I almost checked myself in because of that overwhelming sense of impending doom. I stopped taking it and almost immediately it calmed down. It turns out methotrexate can exacerbate existing mental health issues, and I’ve had depression and anxiety my life. It was genuinely the worst anxiety I’ve ever had in my life.

[@bradjohns2870]

Thank you for your transparency with your experience. I know others who have had a similar experience.

[@lowenplas]

I know many also, it’s such a shame, I know people who have said they’d rather succumb to cf decline/death over the way their head felt.

[@WrestlingFan.24]

My son’s consultant validated my concerns when my son was starting as he already has poor mental health. We took it slowly and luckily he was fine . However my sons team did not dismiss that there could be MH complications.

[@annacooper1299]

you are so not alone in that. I was on a medication for my condition that is like the best medication to be on but I started disassociating and having hallucinations while on it. I have been told that I just didn't try hard enough to work past those side effects and that I don't want to be well. The chance of it helping was not worth my mental health either

[@lowenplas]

I was dissociating also and it was so strong, I was so forgetful and my brain fog was destroying any motivation I had, I was up all night crying scared and anxious and unable to leave the house in the day. I wasn’t able to find the happy medium.

[@annacooper1299]

@@lowenplas I am glad you were able to realize the cause and fix it. As much as it sucks that your lung function has gone down you are actually able to enjoy living. Don't let anyone make you feel bad about your choice. Your body your choice

[@Zoe-vu7nq]

Hi, can I ask how Symkevi worked for you before you tried Kaftrio? My son is on Symkevi and we didn’t switch to Kaftrio yet as he’s very well and always has kept well, and he is fine on Symkevi. We’ve felt pretty judged for not switching, but we wanted to wait for more data and decided if his health looked like it was declining at all we could switch. But I’ve read a lot of reports of mental health side effects. For you, if the Kaftrio improved your LF would switching back to Symkevi keep it up or does it not help you much?

[@lowenplas]

I was on Symkevi and it didn’t do a great deal for me there were no increases of lung function or any less hospital admissions. However if it’s working for you I would urge you to stay on it until it no longer has the desired effect and then talk about switching. Symkevi is still a great medication, especially for those who can’t tolerate elexacaftor which is the newer of the modulator combos in kaftrio. Do not feel bad for not switching either you HAVE to do what’s best for you and yours, cf is brutal and there isn’t essentially any right or wrong we just have to go with what we feel is right for us. We are our biggest advocates. We live it. The medical professionals don’t.

[@Zoe-vu7nq]

Thank you :) I really hope that Vertex can find a fix for this problem with Kaftrio, I completely understand why you couldn’t stay on it. I hope a solution comes along soon that helps you and all those that can’t tolerate the side effects, take care! 💜

[@courtneywalker3610]

I really enjoyed watcg this jet but did you need any help with a yt side of things? Sending all my love courtz x

[@lowenplas]

In what sense Courtney? Potentially though!x

[@courtneywalker3610]

@lowenplas anything darling, whatever really! Happy to help, replying to comments and such may be a start so you don't have as much on your plate

[@Rebecca_Bailey]

I’m sorry, but how dare medical professionals try and gaslight you when you know your own body. I know that if you could be on Kaftrio then you would be on it, I’ve followed you long enough to see that, people should keep their narrow minded opinions to themselves!