6 Month Trikafta Update (Part 2)
Last updated: March 2023
I’ve seen so many incredible improvements from Trikafta, as you may have read in Part 1. I expected Trikafta to primarily help my lungs, as other modifiers have, but I never expected that I would be able to identify improvements in so many areas of my body. I realized that CF has impacted so many more things than I ever realized.
My Trikafta experience
Here, I’m breaking down the positive changes in areas besides my lungs and breathing.
Skin and nail changes
I was beyond surprised to see changes in my skin and in my nails. As a teenager, I noticed that I began to get fine lines on my face. I despised this and used every kind of skin care treatments and cream that I could find. Shortly after starting Trikafta, I notice that some of these fine lines began to disappear.
My face began to look fuller, the volume loss under my eyes (or under-eye bags) started to fill out and lighten in color. I no longer got salt crystals on my skin after sweating and my nails are stronger and less prone to breaking or tearing.
Decreased joint and body pain
Growing up, the chronic pain I experienced was my number one issue with CF. It affected my daily life more than digestive issues, coughing, or exacerbations. I would have days and weeks of being unable to walk normally with joint pain in my ankles, knees, and hands that prevented me from all sorts of activities. I would experience fevers on and off from the intense discomfort. Ibuprofen was the only thing that provided any relief and I took it regularly.
This past year I had been fairly successful in treating my pain with regular massages, in an effort to avoid overuse of NSAIDs (Nonsteroidal anti-inflammatory drugs). After starting Trikafta, my pain disappeared. I can’t remember the last time I required medication to deal with body and joint pain.
I’m able to do so much more now because of this relief from chronic pain. It’s one of the biggest ways my quality of life has improved in the last six months.
My experience with gaining energy from Trikafta is a funny thing to try to describe. I’m an extrovert through and through. I would rather be in a large group throwing a party than to be at home alone. I love going to weddings, concerts, and almost anything involving large groups of people gathering together for a good time. My mental and emotional health thrives in these situations.
However, for most of my life, shortly after the fun experience ended, my body would physically crash. I could sleep for days straight. I would be so drained that I would spend what was left of my weekend laying in bed. During the workweek, I would nap instead of eating lunch and go to bed as soon as I got off work in the evening. I liked to say that I have a high energy personality with a low energy body.
The first change in energy that I noticed on Trikafta was that on a day that I spent doing a large grocery shopping trip. Normally, going to multiple stores, pushing a heavy cart along the aisles, and managing to keep a toddler happy with snacks and funny faces while we shopped would take it out of me when I got home. I had a habit of putting away the items that belonged in the refrigerator and freezer, and leaving the rest to sit until I felt up to putting them away. But this time, once I got home from running errands, I put everything away and started cooking a week worth of lunches.
The thing about gaining energy is that it sneaks up on you. I never knew how exhausted I felt until I stopped feeling it. Trikafta has helped me not only have more energy but also have more grace and compassion for the ways I used to struggle.
A few months into Trikafta, I noticed a change in my appetite, my nausea symptoms, and my overall digestion. I had my gallbladder removed as a teenager and experienced a decrease in digestive symptoms related to CF. Aside from the struggle to maintain a healthy weight, the digestive aspect of CF didn’t really impact my daily life.
As an adult, I’ve rarely struggled with abdominal discomfort or issues. I started noticing improvement for the better in my appetite and willingness to eat. I stopped having daily nausea, but I began having daily stomach aches and discomfort.
After speaking with my care team, we decided to reduce my dose of pancreatic enzymes from four capsules to three capsules. My symptoms improved immediately, which leads me to believe that Trikafta is helping my digestive system to the point of needing a smaller dose of enzymes. Altering and lowering other medication doses has been one of my most unexpected and thrilling results of starting Trikafta.
What has your Trikafta experience been like?
All of these things remind me of how much this drug is working, changing me from the inside out. Trikafta has absolutely altered my life and I’m so grateful to have the incredible experience of improved health after 24 years of cystic fibrosis progression.
Has Trikafta improved your (or your loved ones) CF?
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