How are you doing on Trikafta? Benefits? Side-Effects?

Posted by Pug, Volunteer Mentor @ckscoville, Feb 17 7:19am

Shortly after being diagnosed with Cystic Fibrosis, almost five years ago, my doctor prescribed Trikafta. I almost went into shock at the cost of it. Nevertheless, I have to say that it made a wonderful difference in my life! Prior to Trikafta, I was accustomed to spending 30-40 minutes of hacking and coughing whenever I lay down to sleep, in addition to frequent coughing spells during the day. That kind of coughing virtually disappeared soon after starting Trikafta. Of course, in the first few days on the drug, I did experience what others have called the "purge" when I coughed up all kinds of junk from my lungs, but that passed fairly quickly.

I've not experienced any side-effects from the drug that I'm aware of, but that could always change. I am increasingly anemic (macrocytic anemia), but I have no reason to attribute that to Trikafta. I am curious to know if others on Trikafta would share their experiences with the drug, as well as any side-effects they've noted.

Interested in more discussions like this? Go to the Cystic Fibrosis Support Group.

Pug, Volunteer Mentor | @ckscoville | Mar 29 1:13pm

In reply to @sdlarson91951 "I’m Stevo 73 years old living in Monticello, MN and was diagnosed when I was 45...." + (show)

@sdlarson91951 Stevo, first of all, welcome to the group! The fact that Medicare Advantage has paid for your Trikafta is a true blessing to be appreciated. I cannot use Medicare Advantage with losing access to some doctors that I depend on, but I really am glad it's worked for you.

I had a different problem using the vest; it interfered horribly with my pacemaker, causing my chest pain every time I used the vest, so I had to give up the vest or give in to the pain... I gave up the vest. Doing so, I looked for alternatives and -- on Mayo Clinic Connect -- found others who had used a Theragun successfully to break up junk in their lungs. I got one and my wife used it on my back regularly to break stuff up. It worked very well!