6 Month Trikafta Update (Part 1)
Six months ago I began taking Trikafta--a life-changing treatment for cystic fibrosis. While Trikafta is not a cure, I affectionately refer to it as my “silver bullet.” I’ve noticed so many changes in my body and in my daily life because of this drug, ranging from deeper breaths to having more time and energy to lay on the floor and play blocks with my daughter. The positive results from Trikafta have rippled far past physical health and into every area of my life.
It was the very first thing I noticed after starting Trikafta. I was on the second day of taking the drug when my family and I decided to tour an annual holiday lights event put on by our local zoo. I walked around all evening along the crowded paths, upstairs and ramps, and with the cold wind entering my mouth and nose with every breath. Walking to the different displays made for a cardio exercise that would’ve normally left me feeling winded, and the cold air often left my lungs with a sort of burning sensation.
Through years of struggling with shortness of breath from CF, I had learned to temper the sound of my breathing so that I didn’t draw unwanted attention to my panting. It probably didn’t actually make the sound quieter, but it helped me feel less conspicuous all the same. That night, I didn’t even think about my breathing. I never tried to hide the sound, slow my breathing, or pause to catch my breath. I was elated when my husband pointed out that I didn’t cough even one time during the event. It felt too good to be true.
Fast forward to now, my breathing feels even better. I have crystal clear breaths without crackling or popping, the ability to run, and even doing breathing exercises without having to take breaks to catch my breath. While all of those are amazing improvements, I think my favorite change may be that I’m able to talk on the phone while walking without becoming short of breath and muffling the phone receiver--it’s the little things!
Now, this isn’t exactly hard data, but I’m going to say that my average rate of exacerbation (which I don’t believe is technically a unit of measurement, but stay with me) was about one exacerbation every three months.
In the past three years leading up to Trikafta, I was sick (infection/exacerbation) for a total of 365 days--one entire year. I assumed this track record would continue after I started Trikafta, after all, I knew that it wasn’t a cure. However, since I’ve started the medication (in November 2019) I have only been sick one time, in which case I tested positive for influenza A.
Aside from that one instance with the flu, I have gone 6 months without a typical CF exacerbation. In addition, I was able to stay home with IV antibiotics and Tamiflu and didn’t require hospital admission while fighting the flu!
Prior to starting Trikafta, my lung function had remained stable for about 2 years. Though my number of exacerbations had increased in that time, my FEV1 had only fluctuated 1-2% from my baseline.
After starting Trikafta, my first PFT (pulmonary function test) was taken in February at a clinic appointment where I tested positive for the flu the exact same day. I felt sort of crummy and didn’t expect an increase in my FEV1 because of it, yet my test results showed a jump of 10%--despite the fact that I had the flu! To say that I was thrilled would be a serious understatement!
Lung bugs (aka bacteria)
Before Trikafta I had always cultured at least one type of bacteria. Since Trikafta, I have had multiple tests done that have shown no bacteria whatsoever. I could hardly believe the results from the first test and requested x-rays to confirm that things looked clear. X-ray results showed astounding improvement within that short three months of taking Trikafta (February 2020). I felt an enormous amount of relief. This was proof it was really working!
In the first week of taking Trikafta, I had experienced an increase in coughing. I was warned about this by my doctor and quickly observed the online chatter about the Trikafta “purge.” I assumed that the long term effects in regards to coughing would resemble that of when I was a kid. Maybe I would have more nights without waking up from coughing, or perhaps I would be able to pass off my coughing like I was clearing my throat like I could then.
To my delight, my cough vanished. I don’t feel the unavoidable urge to cough anymore. The only time I even come close to coughing is while I’m doing breathing treatments, coughing perhaps mostly out of habit, or just the feeling like I should do my diligence for the sake of airway clearance.
One of the most surprising results of Trikafta has been the need to adjust my breathing treatments. I’ve had nearly the exact same regimen for 10 years. I never believed that it would change!
Shortly after starting Trikafta, my normal 7% sodium chloride nebulizer treatment began to feel too strong. My throat would burn and I would develop a sort of low wheeze after the treatment. This wasn’t like anything I had ever experienced.
When I talked to my clinic they said it was becoming very common among patients taking Trikafta to have to lower the strength of this treatment. Their lungs were becoming too clear to have such a strong treatment. Because it is meant to help reduce bacteria and help make sputum easier to expel, this treatment was simply not needed anymore. My doctor chose to dilute my treatment from a 7% to a 3.5% solution, which is proving to be a better fit for my new “Trikafta” lungs.
My lungs feel so clear, strong, and healthier than ever. My quality of life has skyrocketed in the last 6 months and I have faith that it will only continue to get better and better. Read on to part 2 to read about the positive changes I’ve seen in other ways!
Have you seen positive results from Trikafta? What has your experience been?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?