When ds started orkambi he had a stuffy nose, cold like symptoms and digestive issues. Very loose stools, liquid for several days. Being his main cf symptoms were digestive and sinus and he never really had a cough unless sick, figured that was his purge. When he switched to symdeko he had a drier cough, which he said was mainly that it felt different to breathe and he was seeing if he could cough anything up. And a few days of tiredness and headaches
I'm on day 14 of Trikafta and haven't had anything you could call a "purge". I've noticed my mucus is thinner and comes up easier, but in no way has there been a purge. (I have abdominal pain and nausea though and I've heard others have had this as well).
DS is on day 8 of Trikafta. First day experienced stomach pain and loose stools. Cough increased and he started coughing a little bit of stuff tho has never ever really had a productive cough. A day of throat pain, which I've heard some had and who coughed up tonsil stones. A few days ago indicated he's got some muscle pain, back and neck. Ibuprofen and exercise helped. He continues to have stomach pain off and on, but well formed stools. Said he coughed up a small, mucus plug yesterday at school.
I am on day 8 with no purge yet myself. I have weird headache but could also be from other meds so not sure which it’s from. Otherwise, no side effects. All GI issues have been corrected since starting meds from day one and I am noticing a big increase in energy and better breathing at day 8 already.
I have been on Tirkafta for 2 months now. I have never had a mucus purge, though I was warned of it.
Immediately as it built I have coughed less and gained 15lbs average. Having literal days of no unintentional cough. Pancreatic enzyme levels have been higher, though not normal levels.The only even relative bad effects have been higher BP average and the strange headache/lightheadedness most seem to have, that for me always becomes a full migraine. I may have just been fortunate, but it works.