Elexacaftor / ivacaftor / tezacaftor for Cystic Fibrosis User Reviews

• amu...
• February 5, 2020

Elexacaftor / ivacaftor / tezacaftor "I am 42 years 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 was very close to needing a blood transfusion. I previously had a mild case of anemia but NEVER with shortness of breath, leg swelling, or sheer exhaustion. Digging further, I know of 2 other CF patients that have experienced leg swelling and 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."

• car...
• 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 of 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 I was 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%."