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Trikafta//Kaftrio 9 months evaluation
I am on Kaftrio (Trikafta) for 9 months now. It has helped me enormously. My FEV1 went from 25 to 30% (which is an increase of, relatively 20%), my energy is up 50%. I gained 10 pounds in weight (10%) and I don’t need any antibiotics anymore (while before, I was on high dose bactericide continuously). No inflammation, no infection. It is a miracle indeed and I noticed the difference a few hours after taking my first orange pills.
I have three side-effects, one of which I don’t complain about:
- My eyes are irritated (wet). Looks like an allergic reaction because it responds reasonably well to antihistamine eyedrops, but it is not seasonal (hay-fever related). It has continued the entire winter. I think it is a response of my eyes to either the kaftrio itself, or one of its metabolites, or to the increase of chloride ions in the tears. Perhaps my tears are more salty now (NaCl), but it also possible that the overload of chloride ions have bound to another positive Ion, perhaps even Hydrogen, which would together form HCl (hydrochloric acid), which in the eyes give the effect of having swum in a public swimming pool that is wrongly dosed on HCl. I remember this from my youth, and the effect that Kaftrio has on my eyes resembles this feeling in a softened version. Perhaps a lower dose of Kaftrio would be more optimal. I will talk to my cf team about this.
- My sleep is shorter, mostly I wake up earlier in the morning and/or middle of the night I wake up and need some time (half an hour) to fall asleep again. I meditate at those moment and don’t bother about it. When in need, I have a siesta at daytime (30 to 60 minutes). According to my sleep tracker, I have about the same amount of deep sleep as before, only less sleep in total. Since mostly I am not tired during the day, this is not worrying for me so far.
- There is also a noticeable effect on my procreative (sexual) system and functions. I wrote this about on our website in a tale, you can read here.
All in all, so far I am very happy with the effects of Kaftrio (Trikafta). It has changed a lot for the best.
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12 Replies
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Paul, it is so good to hear that you’re doing well and have minimal side effects on Trikafta. I can report that since lowering my dose last summer (in July, I believe), I’ve had a much easier time tolerating it and still see significant benefit. I’ve now been taking Trikafta for two and a half years!
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Hi Jenny,
Are you still on the forum? I apologize for not having responded for such a long time, much has happend and I went through a nightmare of mental side effects from trikafta. I post on the forum soon to tell about it. Hope you are doing well. Debbie and I are holding on to eachother to overcome the situation, and recently with some succes fortunately.
Cheers,
Paul
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Hey Paul! It’s great to hear from you! Jenny stepped down as a moderator a while back, but we still keep in touch. She’s doing really well. I let her know that you posted, and she was really glad to hear from you. @William is the moderator of this forum now, and he would be happy to answer any questions. Glad to have you back!
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Thanks Kevin, good to hear from you and Jenny. I will post about my experiences with Trikafta soon
Cheers
Paul
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Hi, Paul! I hope you’re doing well! Whenever you are ready to open up about your experiences with Trikafta, we are here to support you.
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Thanks William, I wrote a Tale about my experiences with Trikafta. It will appear on our website for free download soon. I am currently waiting for my website operator to upload it and give me the download link.
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Hi William,
I have just posted the link to the report I wrote about my mental nightmare on Trikafta.
Cheers,
Paul
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You can find it here
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Hi Paul, that si great to hear how well you are doing with Trikafta. 🤩 may I ask if you have been taking anything to support the liver as well? My 7yo niece with CF didnt have very good liver function test results after taking Orkambi for a few year and now she has just switched to Kaftrio and we wonder what supplements to give her to improve the liver.. any ideas please? Many thanks and all the best 🤞
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Hi Jeandarc,
My liver has (as far as I know) had no problems with Trikafta. It was checked 4 times the first year and yearly after that. Some slight enzyme elevation but nothing beyond the normal borders. My dose reduction was caused purely by the mental side effects of Trikafta that were unbearable. And even this reduction did not help. But I had to stay on it because of my very poor lungfunction (20% FEV1).
Cheers,
Paul
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Many thanks Paul, that’s very helpful. My niece has been taking Dekas vitamins containing all sort of vitamins that help as a supplement, we order them from a doctor based in Netherlands, let me know if this would be of interest to you, I’ll share the link to the website and the doc’s email address.
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Yes, I take Dekas as well.🙂
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