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45 finally diagnosed with CF, treating with Alfytrek: Anyone else?
I was finally diagnosed in March at age 45. I'm 5 weeks in with Alfytrek. They told me it would get worse before it gets better. Some lung improvement has happened. I can tell it's trying to drain my sinuses. The fatigue it really tough and now my lymph nodes in my neck hurt probably from my ears trying to drain. Anyone else experiencing this and is there light at the end of the tunnel?
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@combineguru, I hope you find that light at the end of the tunnel. I was diagnosed much later than you, at the age of 72 five years ago. I'm on a different modulator than you are, Trikafta, and after an initial "purge" of junk from my lungs I actually felt much better. Like you, however, I do experience some sinus blockage affecting my ears. Do you use any kind of nasal rinse? I've found that helpful as a nightly practice.
Yes, I use sinus rinse and a navage. It's pretty chronic. It's been going on all my life. Honestly, when I kept seeking help to find out what was wrong with me, it was the sinus congestion that I struggled with most and let's just say unnormal bathroom habits I believe coming from my pancreas. I'm 5 weeks in. I just feel so sick. I feel everyday multiple times a day like I'm dying and I worry it will be like this until I'm too weak to recover
@combineguru It really sounds like you need to go back to your doctor(s) to adjust either your medications or treatment to give you some relief. I'm really sorry you're going through this!
@combineguru, sorry to hear the side effects of Alfytrek have been challenging. I'm tagging @tw508 @helen1000, who have experience or knowledge of Alfytrek and may have more to share.
Combineguru, are things getting better? Were any adjustments made to your treatment?