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Thread: Trikafta Q&A, Experiences, etc.

  1. #1
    Hail2Pitt
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    Trikafta Q&A, Experiences, etc.

    Hi all,

    I know that a lot of folks are currently taking Trikafta, or at least are taking one of the other modulators. For me, I havenít been able to take a modulator before, and I have questions about what to expect. If folks could chime in and tell a little about their experiences, Iíd greatly appreciate it!

    Here are some of the questions that I have:

    My doctor talked to me a bit about some side effects that patients have had when taking Trikafta. The two that stand out as reasons you may have to stop taking the drug are liver issues and severe, itchy rash that you canít get rid of. The possibility of having a side effect and needing to stop the drug is admittedly tempering my excitement slightly, so I wanted to see what experiences folks have had. For Trikafta, what kinds of side effects, if any, have you had to deal with?

    Iíve heard patients talk about a mucus ďpurgeĒ that happens after you start the drug. It sounds like for a lot of folks, they clear a crazy amount of stuff for a number of days after starting, and then things calm down. What was this like for folks? How long did it last?

    Once youíre on Trikafta, what does it mean for your airway clearance? I do a minimum of 2 sessions every day (sometimes 3) plus exercise, and if I miss even one treatment, I can really tell. Do you still need to do airway clearance like you used to? Or, are you able to do shorter and/or fewer sessions a day?

    What have peopleís experiences been with the infections in their lungs? I have an especially pesky and resistant case of M. Abscessus, and Iím wondering what might happen when Iím on Trikafta. While Iím trying to not enter this with any expectations, my doctors seem optimistic that at the very least, the bacterial burden will decrease. Have people seen this with their infections? Did you seem them become less of a factor, or even go away?

    What other experiences can you share?

    Thanks, everyone!

    Jim

  2. #2
    Senior Member
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    I have taken Orkambi and was switched over to Symdeko once it became available. I was switched over because of the better results that Symdeko had, but did fine on Orkambi. I went through two purge periods starting both drugs, however the first one was the worst because it was the first time I had something new and working in my system. That purge period lasted about 3 months for me on Orkambi and about a month on Symdeko; but it's different for everyone. You'll be amazed at what you can get out! You're lungs will be sore from coughing up all the plugs but you'll feel so much better once it's out.

    When it comes to the liver stuff on these drugs there has been some new development on figuring out how to take it. I was someone who's liver functions got better on these meds, then got worse. However, over the past couple of months doctors and researchers have found out that our livers are holding onto too much of the drug Ivacaftor. Which is one of the drugs in all three (Kalydeco, Symdeko, Trikafta) modulators. In Symdeko and Trikafta, there is a nightime dose which is essentially just a booster of the Ivacaftor. They found that if they have us stop taking the nightime dose, our liver functions have improved and we have remained stable with just taking the morning dose. This is probably what will continue happening for us with Trikafta. So good news there!

    When it comes to medications and airway clearance, nothing has changed for me. Some people have been able to reduce what they take, but many are on their same routine. When it comes to airway clearance in general, it never hurts to do it as many times as you can, but ultimately that will be up to you. When it comes to infections, my lungs have been stable with few infections. I still culture the same bugs and resistance hasn't really changed. I feel so much better though and my lungs are so much clearer. I still am able to get up some crazy huge plugs a couple of times a week which is great! I feel my life and health has gained some stability and things are starting to become more predictable, lung health wise. I still have random stuff that happens but doesn't affect my lung function at all.

  3. #3
    Hail2Pitt
    Guest
    Thanks so much for your comments, kenna2!

    I imagine that my purge will be pretty wild. Every once in a while, I'll have a day where I suddenly have a ton of junk to cough out, and it lasts all day. I don't really know why - sometimes it's after a hard workout, other times it just happens. The stuff that comes out looks crazy, I cough it out all day, and then the next day it's done. I assume there's a lot of that stuff just stuck in there, and every once in a while some of it breaks loose. I can't wait to get it all out!

    And what you are saying about the liver stuff makes me feel better. Overall, my liver numbers are good, but they went up the last two times I was on long-term antibiotics. Once it got really bad, and we had to stop treatment altogether. While that doesn't necessarily mean I'd have trouble on Trikafta, it concerns me. It's great to hear there's at least one option!

  4. #4
    I was in the phase 2 trial for Trikafta and have taken both Orkambi and Symdeko. I had such a different experience starting Trikafta than the other two that I'll just focus on Trikafta.
    I absolutely had a mucus purge. It started about four hours after the first dose, and lasted for the whole first day - then it stopped. Over the next few weeks my PFTs inched up and my coughing went to pretty much nothing. I was a person who did not have an amazing PFT response - and I think it's important to know that that might happen. BUT, I still saw the highest PFTs I had seen in years so I'm not complaining one bit.
    As far as bacterial infection, that's something I'm quite curious about myself. For the phase 2 trial I only got a month of drug but I sure felt like I didn't need inhaled antibiotics during that time. I think I'm about to start treatment for MAC and I'm really hoping that Trikafta will help with that - at the time of the trial I just had my Pseudomonas. Based on the data from Kalydeco, nobody should expect to get rid of their bacteria, but I think we can expect to have a lower bacterial load. And we definitely can expect fewer exacerbations.
    For airway clearance, I think everybody will be different. I do know that some people have backed off on their airway clearance. I do not plan to, but I only do twice a day normally anyway. I'm hoping that I'll be able to go from continuously cycling Cayston and colistin to doing one month on one, a month off everything, a month on the other, etc. I also hope that I could sometimes skip Pulmozyme, but I'm not willing to bet on anything else at this point.

  5. #5
    Hail2Pitt
    Guest
    Thanks for the info! It's really helpful to hear your experience.

    I've been dealing with M. Abscessus for about 13 years, and have never been able to get rid of it. And I've been smear positive for several years now, despite treatments. I just finished one "failed" round of treatment, but before we try another one, my doctors want to see what happens once I'm on Trikafta. I'm hoping the Abscessus will become less of a factor just by me being on the drug. And, who knows, maybe my next round of treatment, whenever that is, will be more effective because of the Trikafta.

  6. #6
    Hail2Pitt
    Guest
    Hi kenna2 - I wanted to ask you some follow-up questions about your experience on Orkambi and Symdeko.

    I got my Trikafta, and started taking it a week ago. It's hard for me to know if it's doing much yet, since I came down with a respiratory infection right before I started taking it. My wife got the infection before I did, and it's taken her nearly two weeks to get back to normal, so it's a rough one and i know I still have a ways to go.

    What's striking and frankly kind of concerning is the amount of junk I'm clearing from my lungs (and blowing out my nose) each day. My doctors have me on Cipro and Tobi, but given the amount of crap coming out of me, we're thinking about IVs. But, I'm wondering if this isn't only because of the infection, and is at least partly due to the Trikafta. When you went through your purges after starting modulators, what was it like? What I'm experiencing is that about an hour after I wake up, things seem to loosen up and I start clearing stuff. And then it goes on literally all day. This has been happening all week. I've been home from work, and it's hard to imagine going back with all the coughing I'm doing.

    Thoughts?

  7. #7
    Senior Member
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    So the amount you are getting up is probably from both the infection and from the Trikafta. I've been seeing lately that people who are taking it are bring up a ridiculous amount of old junk. Someone had to ask their doctor about the color of the stuff they were bring up because they've never seen that color before..lol. Each time I changed meds, I got more and more stuff out and I think that is because of how much more effective the med is. I brought things up that were black, bloody plugs, hunter green to light green, grey, and different shades of yellow and white. The whole mucus rainbow. I coughed for days/ weeks upon end getting all stuff out and I was in a healthy spot. With the jump your making from Orkambi to Trikafta, it doesn't surprise me that you're going to have way more mucus clearance. It's also not uncommon for us to be put on IV meds when we change meds because of everything we're coughing up and the toll it takes on us. Also remember, with all that movement, it's clearing out and opening up new areas of infection that haven't been hit before. So it's not unheard of. I personally would push for IV meds, because it might take a bit of the edge off and help with the transition a bit too. Also make sure you hydrate like crazy too...that will help as well. I hope you feel better soon!
    Last edited by kenna2; 11-14-2019 at 04:56 PM.

  8. #8
    Hail2Pitt
    Guest
    Thanks for your reply! It's helpful to hear what you and others experienced with the junk you were bringing up. This is actually my first modulator, so I didn't entirely know what to expect.

    Though, for you (and others), how long did it take for you to feel better? I've read where some people say they felt better quickly, i.e., , within a few days, they had more energy, better lung function, etc. For me, granted I'm still dealing with an infection, but I feel worse right now. I don't know how my lung function is, but I definitely am more tired than I usually am. I also don't see my purge ending any time soon, as my nose remains a faucet and I still have a productive cough all day. I was kind of expecting that I'd start the drug and feel great within days.

  9. #9
    Senior Member
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    For me it took me a couple of days for me to start feeling the changes, but it took me a couple months to look back and realize "wow I feel better". I noticed my body wanted to cough, but I didn't actually need to cough and that was weird. I think I went though a period we're I just coughed for no reason, because I was so used to coughing all the time. Seeing how much I brought up and how old some of those pieces were and the size was shocking too. I still wonder where those huge pieces of plugs came from. I really was focused on that for all those month so it could have been sooner. My first admission where I was sick with something else that would normally bring down my lung function and it didn't was amazing. My lung function was actually stable the entire time and I couldn't believe it. That's when it really hit me and I knew it was actually working. The purge period for me slowed down slowly but it does end I promise. I'm excited for you and hopeful that you get some great relief soon!

  10. #10
    kenna2 with all the different junk you were coughing up, what was your starting fev1? In a way, I am a little terrified of all the coughing from the "purge" because with my coughing fits I get SOB and panic, even with oxygen.

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