"New Pills, Old Pills, Yellow Pills, Purple Pills" by Elena Goodrow

I took this photo the day I started taking Alyftrek. Little did I know what was going to follow…

I have been very fortunate to have the opportunity to take genetic modulators for nearly half of my life. I was on the drug trial for Orkambi when I was 11 years old, and that rolled over into the Symdeko trial. Pictured below was me taking my first ever modulator.

By the time I was 15, Trikafta was approved and I got to start taking that. My lung function began to improve, I started having less infections, and things seemed to be improving. I dealt with many side effects, but after so many years of trying new medications I knew that this was part of the deal.

After 7 years of taking Trikafta, the side effects continued to settle in and get worse. I began feeling extreme fatigue, stomach issues, brain fog, mental health issues, and more. I didn’t question these symptoms because I knew Trikafta was helping my lungs and I needed to power through. So when Alyftrek was approved, I saw a glimmer of hope. Maybe this newest genetic modulator would continue to support my high lung function while also decreasing my struggles with side effects. I had heard positive experiences from people taking Alyftrek, so I decided it was time to give it a try.

After one week on Alyftrek, I had some flu-like symptoms such as chills, body aches, headaches, and lethargy. I expected this, as I had the same experience when I started Trikafta. I knew it wouldn’t last long. By Day 9 and 10, my headache turned into something I had never felt before. Piercing pain wrapped around my entire skull and shot down my spine all the way to my tailbone. It was excruciating. I powered through, but I wasn’t myself. I started acting different. I shut out my partner, I snapped at people I love, I refused to engage with family, I completely shut down. This was very unusual for me. I started experiencing severe depression. I felt hopeless, like I couldn’t go on.

On Day 11, I became so dizzy that the room was spinning. Voices sounded distant, I couldn’t stand up. Then I started to lose my vision. My vision was so blurry I could not see 5 feet in front of me. I lost all sense of who I am. I felt disassociated, unfamiliar, and worthless. It was the most terrifying thing I have ever experienced. It all set in so fast.

After my partner helped me call my speciality pharmacy, they explained that I was experiencing known side effects from Alyftrek. They instructed me to stop the medication immediately, and wait for my doctor to reach out. I stopped taking the medicine, but that same day I started breaking out in a rash. Full body, bright red, swollen, itchy rashes. They started on my feet, went up my legs, around my torso, and covered my arms. It felt like I had been bitten by a thousand fire ants. I covered myself in lidocaine cream to try and numb the pain, but my whole body burned. Apparently, this is also a known side effect.

After a phone call with my doctor a couple of days later, we determined that my body cannot tolerate Alyftrek. Unfortunately, I had experienced too many of negative side effects that had been recorded from the trials. Every person’s body is different, and mine said it did NOT like Alyftrek. Since I had been stable on Trikafta, we went back to that.

I’m happy to say that I’m now back on Trikafta, taking a reduced dose to help diminish the unwanted side effects. My rashes finally healed after a couple of weeks, and I feel better than I have in a long time. My brain feels clear, I feel whole. I feel like myself.

Genetic modulators are a beautiful opportunity. They give us a chance at a new kind of life. They gave me a chance to have healthier lungs. They are also not for everyone. I’m so happy that there are options for people, if one modulator doesn’t work there are others to try. There are also still people that don’t yet have that opporunity, which is more work that needs to be done. Everyone deserves the chance to find what works for them. Turns out, Alyftrek doesn’t work for me. Trikafta does, and even though figuring that out was a pretty horrifying process, I’m glad that I had the opportunity to try something new. So now I know that I don’t want to try it again, haha!