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Thread: Trikafta Q&A, Experiences, etc.

  1. #11
    Senior Member
    Join Date
    Sep 2016
    Posts
    220
    Before starting Orkambi I was at 46% and before Symdeko I was at 58%. I am now at 65% and still waiting for insurance to approval. I completely understand being terrified, but in my experience there were breaks of hours or days before another huge purge hit. But once you see what comes up, I think that excitement takes over and the hope that more and more comes out takes over. After a while too, the purge period becomes easy and plugs come up so much faster with less work. It's worth it, trust me.

  2. #12
    Thank you all for your questions and responses. I took the first two modulators briefly and had horrific side effects to both causing me to stop them within the first two weeks. I have been very afraid to try Trikafta honestly. However, hearing your stories here has made me really want to give it a valiant effort even if it does make me initially violently ill for a few weeks. I have two young daughters and I have enlisted help this time around so that if I must go into the hospital for awhile to get through the initial side effects, I can give this medicine a better and longer try. I am seriously afraid because it contains the same two medicines that made me so sick the first two times but I also know how good it has been for others and how good it can be for me in the long run. I currently baseline my PFTís at anywhere from 75-90% so I am very blessed and healthy with this disease already, but I do obviously want to live longer and live my best life with CF. Prayers and well wishes to all of you!

  3. #13
    Senior Member
    Join Date
    Sep 2016
    Posts
    220
    Chaos...I'm so glad to hear that you're pfts are amazing and that you're willing to give Trikafta a shot. Can I ask what symptoms you were experiencing with the other two modulators? Just curious because, I may have some insight to help calm your nerves.

  4. #14
    Kenna2.... I had pretty much everything you can think of... body aches, fever, severe diarrhea, severe vomiting, terrible itching all over, a horrible cough that just didn’t quit and made me vomit more, extreme fatigue where I couldn’t get out of bed (which always pairs great with diarrhea and vomiting), lots of trembling/shaking. I am sure there was more but I can’t recall anything else right now. I felt miserable in every way.

  5. #15
    Junior Member
    Join Date
    Feb 2005
    Posts
    9
    Iíve been on Trikafta for a week exactly. Orkambi and Symdeko did nothing for me (2 copies f508del ). I was at my witís end with the return of the phlegm daily and the Trikafta has been like an ďoffĒ switch. I had a 5 hour purge that was so damn emotional. Phlegm is almost non existent since then. Barely cough and always able to take deep breaths. I was losing the CF battle at a rapidly accelerating rate and was starting to think about the inevitability of transplant sooner than Iíd hoped. I havenít had a PFT since starting and Iím not expecting much since I can feel my lung damage. Thatís okay, itís just a number. Every body is so unique you are better off trying not to anticipate anything ďnormalĒ. Itís hard to do, but youíll drive yourself crazy. I went through a range of emotions for the month after approval and before I got it and I couldnít focus on life. No big whoop, but it was a waste of time in so many ways. On the other hand, enjoy the anticipation !!! Good luck!

  6. #16
    Junior Member
    Join Date
    Jan 2019
    Posts
    4
    My son just started taking Trikafta this week, we are on day 3. So far haven't seen much of a change in his cough or purging yet but we are lucky in that he's always been pretty healthy, 80% or higher on his PFTs. I'm most interested to see how this will effect his growth and digestion and blood sugar, because he's started to have raised blood sugar levels (due to puberty) and he's always been around the 25th percentile on the growth chart. I am hoping that we can at least decrease the length of treatments. Right now he does a lot compared to what I see most people do on here, thats kind of by my choice not by his doctor's. Hour and a half of vest twice a day, with 30 minutes of each medicine nebbed, alb, saline, pulmo with it. I am thinking if he shoots up alot in his PFTs next time at clinic, maybe I will let off him a bit. Maybe only an hour of vest each day. (Yes, I am that mom, but my hope was that if I could just keep him as healthy as possible, save damage to his lungs, then maybe something like Trikafta would come along since he's so young, 13)

  7. #17
    chempharm23
    Guest
    My experience with Trikafta has been awesome. Before I started Trikafta two weeks ago, my pfts were in the low 20s and I was on O2 5 liters, 24/7. Even dressing in the morning, eating, going to the bathroom, etc. was extremely hard and tiring. I probably didn’t have much time left.

    Enter Trikafta. About four hours after my first dosage, the purge began. For two days I was coughing up thick mucus every ten seconds. It actually was very tiring but it was worth it. On the third day, suddenly I realized I didn’t need oxygen anymore just sitting around. By the fifth day, I didn’t need it for normal activities. It is literally a miracle drug for me. I still use O2 for exercise and sleep, but that’s it! My life has been given back to me, thanks to the scientists and everyone else who made this miracle possible. I barely cough at all and I’m never short of breath anymore. The only side affects that have affected me is itching on my arms and a few other places. I already have high liver enzymes so I’m hoping it won’t raise them any higher. Fingers crossed! I pray daily that the ten percent of CFers who can’t benefit from Trikafta will eventually be helped by

  8. #18
    Junior Member
    Join Date
    Nov 2019
    Posts
    1
    Hi. I was the same as you. Spitting up a lot the first day, than it stopped. But I can breath better and less winded.

  9. #19
    Were any of you able to start the Trikafta while dealing with a current lung infection, or did you have to clear up the lung infection first before starting the Trikafta medicine? I am supposed to start the medicine at my next doctor visit on Monday, but I can tell I have a lung infection again and wondering how that effect it.

  10. #20
    Junior Member
    Join Date
    Dec 2019
    Posts
    1
    I get my first shipment in tomorrow. Ill be starting it on Monday the 9th. Well see what happens. I don't cough and rarely get anything up so it will be kinda exciting to see if I get this so called purge. Im 39 and my breathing is in the mid 70s now.

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