New Cystic Fibrosis (CF) Diagnosis at 73

Trikafta has definitely improved the bronchiectasis, and my infections have been less frequent. I've been hospitalized twice for lung infections since starting it almost two years ago, but that is a great improvement over what I was going through before. I've not been hospitalized for an infection for a year now. One of the nicest improvements is that I can actually lie down to go to sleep at night without a 30-40 minute spell of coughing stuff up before falling asleep. I'm also no longer using a SmartVest (although I had to stop using that because it was interfering with my pacemaker). My lung function did show a slight improvement at my last checkup in early January. As for your other question: I have never had to deal with MAC; I've had other infections to deal with, primarily Achromabacter.

I just found out that Achromobacter is a genus of nonfermenting Gram-negative bacteria under order Burkholderiales. Have you gotten better from this infection? What antibiotic did you use? I have Burkholderia cepacia. Not sure if they are the same kind of bacteria.

Thank you so much for the information. I wish you improved health. I will keep you updated. So much to think about.

I am 65 and on day 3 of Trikafta - diagnosed at National Jewish Health 6 months after going there for MAC Lung Disease tests/diagnosis/treatment plan.
I have two pathogenic mutations. Everything is ‘purging!’ Lungs, so sinuses and intestines … so so so happy I finally feel I will be well.
Are you still using this miracle med? Doing well? 🙏💜
Purple for CF Awareness month of May

Any side effects taking CF modulator? I will take Alyftrek in April. I feel very curious about the potential side effects and EFFECTS, I had frequent pneumonia as an infant, but no any issue after 3 years old until I got MAC in 2022. I am diagnosed as CF related disorder and qualified for the modulator though. My digestive issue is wheat intolerance and my lung issue is BE/MAC infection. I also feel fatigue in most of my life. Other than those, I am totally fine.

As MAC brought me fatigue, I am hoping to return to work place after I take the modulator. Will it help reduce the fatigue? Thanks for any feedback!

@oldkarl Curious about the genes that you are specifically referring to. I have found that there is a relationship with mutations in the FADS1 and FADS2 genes relating to fatty acid synthesis that are related to CF conditions.

Father had 3 brothers. Irish. 4 cousins of one, my uncle had active CF. 2 died in early thirties. 2 still treated in CA now in 60”s. How is this possible genetically unless one of the parents was also active with CF, which I suspect was the case as it was always in his voice? I am a carrier. I have symptoms that are respiratory and digestive, but in addition to rhupus, Hashimoto and relapsing polychondritis which gets very confusing with fibro. Enduring a lot of pain flares…upper back, neck, arms, throat, face, ears, jaw, joints. Wondering about ms as tingling, burning, spreading pain is often.
Anyone with experience of multiple auto immune spectrum and or CF carrier being active? Thanks! Lk.Mich.

I have taken Trikafta for 2-3 weeks. I had a mild hand rash and lip swelling at the end of 2nd week. The symptoms went away in two days. I have been on 3 doses a week and will do it in the first month. Then I will do 7 days a week. This is to prevent allergy reaction/ side effects based on my communication with my CF director in NYU.

Other than that, I do well. Energy gets better, brain fog went away, and weight gained about 2 pounds.

@helen1000 Your gradual increase of doses of Trikafta per week is interesting, and I'm glad you have somebody monitoring you closely. Apart from the mild rash and lip swelling initially, did you experience any change in coughing or mucus production?

@ckscoville This is to prevent a highly allergic action as the dose is gradually introducing to me. My director also wants to see whether a lower dose fits me if my symptoms are less severe as I am a CFRD. You are right - my mucus becomes more watery and less too. I have stopped jogging for four years since I got MAC. But with the help of medication, I am able to resume jogging yesterday and I feel great! 🙂

I will do blood work after one month of taking Trikafta. If my blood work is normal, I will do 7 days a week medication. Right now, I want to take 7 days a week instead of 3 days a week as I see the benefit taking Trikafta!!! In the past, I always feel fatigue (specifically legs) but now I only feel fatigue on the days off Trikafta.