Base

Diagnosed with CF June of 2024. Found one mutation on DNA test, but was told they assume there to be another one that is not yet discovered. Started Trikafta in September 2024 – best day in a very long time. Had the welcomed purge and was able to take a deep breath within 24 hrs. About 8 days in, developed rash on torso, so was told to stop. Retry with lower doses in mid October – after an increase (but not full dosage), began to feel terrible – headache, weak and a bit nauseous. Stopped for three days, all went away. Started up again a couple days later on slow intro again. Was doing well on one orange/one blue every other day. Developed a new type of rash on arms and chest, but began to go away. Increased to one orange/pne blue daily for a week and (with encouragement from Dr) increased to full. After just one day of full dosage, right back to feeling ill again – very weak, feeling sick, but no fever. I stopped med today myself as I did not hear back from team bf end of Friday. I am hoping I improve and am able to get back to the dose I felt ok with. The rash had just about gone away before I stopped the Trikafta, so that was encouraging , but not feeling well now.