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Experiences with Alyftrek
Since January, I’ve been taking the new modulator Alyftrek, and, for the most part, I would say it’s been going well. I’ve definitely experienced “the purge” and other side effects such as flu-like symptoms.
What has your experience on Alyftrek been like? Would you say it’s working for you? If not, why?
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15 Replies
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I’ve been on Alyftrek for a few months now too. The first couple of weeks were rough, major purge and I felt achy all over. But after that settled down, I started noticing some real benefits. Breathing’s easier and I’ve had fewer exacerbations. It’s not perfect, but definitely feels like a step in the right direction. Curious to see long-term results.
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I had those same results the first few months, too! How are you doing now?
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Started Alyftrek in early March, and the first few weeks were rough, massive purge, low energy, and those weird flu-like symptoms. But once that passed, I noticed a real difference in daily breathing and fatigue levels. Everyone’s response is so different, though, so I’m trying to stay patient with the ups and downs.
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How are you doing now on alyftrek? Have your side effects gotten better or worse?
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That’s wonderful news, congratulations to you! I hope Alyftrek therapy will provide consistent relief and help to minimize exacerbations and all of the hard and daunting symptoms of CF.
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Thank you! It’s definitely been a lot sometimes, however the side effects have mostly subsided and gotten better!
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Say, what is “the purge”? Glad to see that after that, folks are getting benefits. My CF team suggested -back in April – I might want to try it, but I’ve just been ruminating on it. My pulmonary sarcoidosis is still what’s giving me a gruesome bad time. I just changed to a different (large) care center, so first I want to see what that “sarc” group might come up with. -jeanne-
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The purge is when a person with cf gets up a lot of mucus and goes through flu/fever like symptoms. It’s just the medicine working through one’s body.
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Hi. I’ve been looking for this topic today as I only started Alyftrek 5 days ago and today feel like I have the flu low grade fever and really bad chills etc. how do you know if it’s the drug or not?
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It’s definitely the medication. I know I had some of those symptoms initially after starting it. They’ll eventually phase out and you’ll be okay.
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So, I was on it for many months but it severely increased sinus pressure; but no significant change to base line symptoms and functions. I actually switched back to Trikafta and the sinus pressure disappeared. I was so hopeful that Alyftrek make more improvements over Trikafta but I do great on Trikafta! Haven’t had a hospitalization is over 5 years. It’s an absolute life changer.
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I’m so glad Trikafta is helpful for you! It helped me some but not significantly and I do believe it gave me more anxiety.
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Every body’s body reacts different and I’m glad Trikafta works for you!
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I am very curious about Alyftrek. I am on month 4 of Trikafta and it has helped lung function and energy levels tremendously. But, there are some side effects. What side effects have you experienced get better/worse on Alyftrek? Has it helped liver functions for anyone (over Trikafta)?
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I’m not sure about Trikafta, but Alyftrek has helped improve my liver numbers a bit! I’ve mostly purged a lot of mucus every few days. Keep in mind, though, everyone is different!
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