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Trikafta side effects


Just curious on who has had to stop trikafta and what your side effects were on the medication and how you feel after discontinuing trikafta?

I'm 38 years old, started trikafta 1 year ago ( June 2022) My Fev1 was 82% prior to starting trikafta. After the first month my Fev went to 92%. After three months my Fev was right back to where I started at 82 % and has remained there.

After being on the medication for one year it has been the worst year I've had in over 20 years. The first three months were awesome but then it all went down hill from there.

It has been non stop illness after illness. In February I was very ill and coughing up lots of blood. X ray was done and showed swollen lymph nodes. X ray was repeated in march and showed the same. Contrast CT was done and showed multiple swollen lymph nodes.

In June I was booked for a bronchiscope and samples were taken from 3 lymph nodes and right lung. Samples came back showing sarcoidosis.

I have made the decision to stop trikafta, go back to minimum drug intervention and see what happens.

Other side effects experience included extremely dry eyes and weird bumps that would randomly appear on my eye.

I also developed blisters all over my hands and feet that were extremely painful, and all of my skin peeled off my hands and feet. Not sure if this was related to trilafta or not. I've never had a rash / blisters like this in my life.

  1. It sounds like you have had an incredibly difficult year. I can't imagine how scary it was to cough up blood. We did have one of our Health Leaders write about stopping Trikafta due to the severe side effects. I'll link her article below if you are interested in reading about her experience. Also, if you would like more support navigating not only one, but now two, rare diseases, our sister site has a couple community members with sarcoidosis. Sending gentle hugs. Warmly, Corene (team member)
    Emma's article on stopping Trikafta:

    1. Hi, I hope that going off TriKafta has helped. I had to go off of it after only 10 days. It gave me a severe measles-like rash that covered 95% of my body. Four months later, I can still see vestiges of it under my skin. I do hope you are feeling better now! Take care, my friend. Lorie

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