I began taking Trikafta, the recently FDA approved CF drug, on Sunday, November 24. When I started, I was very nervous about the side effects and whether I would notice any changes. I also could not believe a drug like this could change me as much as it has. Here’s my advice for those of you who are about to start this drug.
1. Be aware of all the side effects by reading about it on the Trikafta site.
2. Be sure to look for any changes and let your doctor know if a change seems out of the ordinary.
3.Don’t eat grapefruit. That’s the one food that supposedly affects the potency of Trikafta. I never liked grapefruit anyway. I’m just glad it wasn’t gummy bears.
4. Don’t change your routine because Trikafta is supposed to change your life. If you are going to change your medical routine, please be sure to consult your doctor first.
5. Just because your changes aren’t as great as others doesn’t mean it’s not working. Everyone’s body is different.
6. Be prepared to change the way you eat. A lot of people on Trikafta (me included) have increased in weight because we didn’t change how much we eat. It appears that with Trikafta that we are digesting better so what you eat will actually reflect on your weight.
7. Insomnia, while not mentioned on the website, appears to be a side effect. I’ve talked to at least 20 other patients with CF who have dealt with this. I was sleeping three hours a night for quite a while but I’m slowing getting back to my normal six to seven.
8. Don’t listen too much about what other people are feeling or going through. Trikafta is different for everyone. I read that people had flu-like symptoms and that scared me a lot. I never had those issues though and still see a major difference.
9. Be excited about PFTs for once. I am always nervous about PFTs (pulmonary function tests) but since starting Trikafta, I am excited to see where my numbers are now compared to when I started. I’ve seen about an eight-point increase. I know others who have seen a 20 to 30% PFT increase. It’s incredible.
10. Be prepared to feel differently. This drug is a game-changer. Enjoy the new you. Set new goals. Be grateful to finally take some deep breaths.
I hope these tips can help provide some insight for those who might be starting this life-changing drug soon! Trikafta has changed my life. I hope it will change yours too.
Andy