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Trikafta: Is it beneficial to much older patients
I am 81 years old, having been diagnosed at age 73. Obviously I have a very mild form of CF. I’ve been on Trikafta for nearly six years (hetero for F508 deletion). There may have been a very slight improvement in lung function when I started, but function was above average for my age already. What I did notice was daily swelling in my legs below the knees (both knees have been replaced) controlled by wearing compression socks every day, and significant diarrhea (after years someone in the forums recommended I take fiber, which I do now in fairly high dose that controls the diarrhea). When I first started Trikafta, I had pancreatic sufficiency. But after two years my fecal elastase had decreased from 256 to right at 100, indicative of nearly severe insufficiency. I’m not trying to say the Trikafta caused the pancreas problem, but it seems many see improved pancreatic function on Trikafta. So, has anyone else had a similar experience–you’re older and see a lot of side effects but insignificant benefit. I’m thinking of talking to my medical team about stopping Trikafta, but I’d like to have similar experiences to share if possible. (I wonder how may people over, say, 60 years were in the Trikafta trials?)
Thanks!
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1 Reply
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I have not had a fecal elastase test, but one of my siblings in his 60s was recently put on enzymes after being pancreatic sufficient his whole life. Maybe it’s worth asking the doctor whether this is something age-related.
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