Elexacaftor / ivacaftor / tezacaftor for Cystic Fibrosis User Reviews
Brand names: Trikafta
- carly
- November 17, 2020
"First received this combo medication elexacaftor/ivacaftor/tezacaftor when I was 18. This medication has saved my life. I have never felt so amazing. It also made me realize how bad my CF symptoms were. I have not coughed in almost A YEAR!! This has honestly made my life so much easier, being that I’m in college. Also just to note, I’m on birth control and when I first started trikafta, I had a severe rash literally everywhere on my body. It was very itchy but it went away after 4 days. When you first start taking the medication, be prepared for some crazy side effects. The first couple days, I felt like it was the end of me because of how much I was coughing. I also went through this strange point of where I was able to take more air in but my lungs didn’t adjust so it felt like you were choking. I went through all of these symptoms during the first 2 weeks but it was so worth it. I never felt like I was able to breathe until I started taking this wonderful drug. and my lung function increased by 10%"
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Trikafta (elexacaftor / ivacaftor / tezacaftor) "I am 42 yrs old with Cystic Fibrosis GENES: F508 & G542X (78% FEV1 pre-Trikafta) This drug is a GENE modifier, it's amazing! I haven't coughed in 2 months, it's like a dream! With that said, after about a week on Trikafta (although not coughing), I had shortness of breath & leg swelling. I've never had either of these symptoms prior to Trikafta. After an ER visit, they said I had Anemia ~ and very close to needing a BLOOD TRANSFUSION. I previously had a mild case of anemia but NEVER w/shortness of breath/ leg swelling, or sheer exhaustion. Digging further, I know of 2 other CF patients that have experienced leg swelling/anemia since Trikafta. After taking IRON, my symptoms went away EXCEPT my legs still swell. I also called VERTEX to report it. Also, just an FYI... you COULD GET PREGNANT. Trikafta also could cause your reproductive system to operate more efficiently...SO BE CAREFUL ~ this may be a blessing for some wanting kids but it could be a disaster for others."