Hi there. Orkambi user for a few years now. Two copies of Delta F508. Correct me if I am wrong, but this latest Trikafta drug does not improve the level of corrected CTFR over that of Orkambi, correct? Its basically just coverage of more mutations and not a notch forward as far as percentage of corrected CTFR. Also, does any know anything about the mRNA therapies that are in the pipeline that are being advertised as correcting ALL or most of the CTFR within the lungs? Is that just the theory and/or marketing talk? Thanks.
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Trikafta vs Orkambi: Effectiveness Comparison?
- Thread starter NeedyHrt
- Start date
Incorrect. It's better than Orkambi. My doctors and transplant team kinda explained like this. The gates that let the sodium in in Cfers are hunched over and broken down. A med like Orkambi, make those gates straighter but are still a little hunched over. Trikafta makes those gates stand straighter than Orkambi/ Symdeko. The third drug is what corrects it even more, hence it's nickname "triple combo". It also covers more mutations because 90% of CFers make some amount of chloride ion, that amount depends on mutations. The small 10% have mutations that don't make any at all so it's not really going to help them.
Ok. So are we talking about a situation where CF symptoms are being reduced to practically nill? Because I've been on Orkambi for a few years now. However, when I've had long gaps (month or so) in my availability of the drug (insurance,etc), I haven't noticed a huge difference between that and being on the drug. Mildly better CF symptoms with Orkambi.
I'm a DDF508 as well and while I got some benefit from Orkambi, I still didn't feel better a whole lot better on it. I was on Orkambi for about two and a half years. I was switched over to Symdeko which I can absolutely tell is making me better. My lung functions did get better on Orkambi, but Symdeko increased them even more and stabilized me a lot more. I also feel less symptomatic on Symdeko than I did with Orkambi. While I still get plugs up here and there (which I feel I can get up a lot easier now), my cough has decreased big time and chest doesn't feel tight and heavy like it did on Orkambi. While I was taking Orkambi, I was being evaluated for a lung transplant. Symdeko got me healthy enough that I didn't qualify to be evaluated. I also feel like I have a lot more energy. It did not affect what I cultured though.
From the research I've done and from CFers who have gotten to take Trikafta though compassionate use or expanded access, they have also reported a huge decrease in symptoms. Lung functions have improved with some people to put them back to where their lung functions were about a decade ago. A couple of people have noticed a huge difference in just taking their first dose of Trikafta. Some patients have been able to stop some medications, others have not. It affects everyone differently so I can't speak for everyone. Since the approval process with insurances is still new for us, all we really have to go on are the results from the study and the testimonials from those who have had it. I was also told that it won't really affect what we culture. But I have heard great exciting things and how life changing it is.
From the research I've done and from CFers who have gotten to take Trikafta though compassionate use or expanded access, they have also reported a huge decrease in symptoms. Lung functions have improved with some people to put them back to where their lung functions were about a decade ago. A couple of people have noticed a huge difference in just taking their first dose of Trikafta. Some patients have been able to stop some medications, others have not. It affects everyone differently so I can't speak for everyone. Since the approval process with insurances is still new for us, all we really have to go on are the results from the study and the testimonials from those who have had it. I was also told that it won't really affect what we culture. But I have heard great exciting things and how life changing it is.
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Well. I hope it is what we hope it is. Thanks for sharing your Orkambi experience. I just was rather disappointed by the hype/reality of Orkambi and I thought that these future Vertex medications were just expansion into new mutations, but no progress on the actual symptoms experienced..
Well. I hope it is what we hope it is. Thanks for sharing your Orkambi experience. I just was rather disappointed by the hype/reality of Orkambi and I thought that these future Vertex medications were just expansion into new mutations, but no progress on the actual symptoms experienced..
I'm actually on my 2nd week of Trikafta and I will tell you this... it IS the real deal! Within the 1st couple of days, I immediately felt a difference! I almost forgot what it was like to breathe normal! I could take much deeper breaths to the point where it actually hurt cuz I have not been able to take a deep breath in a long time. The wheezing and crackling diminished, I felt more energy, and dare I say that my poop is almost normal! I had horrible tightness with the Orkambi. The Symdeko gave me bad headaches and overall just felt crummy, but the Trikafta seem to be all it's been hyped up to be! Now, I understand why people are so emotional about it. I have my 1st clinic appointment tomorrow after starting Trikafta and I'm excited to see what my #'s look like cuz before I started the new treatment, my lung function was teeter-tottering between the low 30's and even high 20's! So, I'm excited to see where my #'s are at now! I hope it works for you and everyone else who is lucky enough to experience this truly remarkable and life changing drug! ???