1. < MAC & Bronchiectasis

Is there any successful story?

Posted by helen1000 @helen1000, Jan 20 8:54am

My pulmonologist says MAC is rarely cured. But I was also told that less than 30% patients can be fully cured without any reinfection, relapse or recurrence. Is there any success story that someone can successfully manage MAC without recurrence or relapse by AWC over 5 years, 10 years or 20 years? And also without any other lung infection like other bacteria or fungus?

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blm1007blm1007 | @blm1007blm1007 | Feb 4 11:04pm
In reply to @hbarbh "Yes I wear a mask when I do labor that kicks up dust or other airborne..." + (show)
@hbarbh

Yes I wear a mask when I do labor that kicks up dust or other airborne particles. At first I was afraid my days of farm work were over and that was sad. But eventually I just started doing it again. But with attention paid to lung health. I keep a mask in my shirt pocket when I go outside just in case I end up doing something that kicks up the dust... like chain sawing firewood. When I remodeled an old out building and turned it into a tool shed I even bought a full faced mask with a shield and those canisters on the sides to really give me super duper protection against the fiber glass insulation I was installing. I built a woodshed. I built a composting outhouse and I built a porch for my cabin. I put the tin roofs on my cabin and on the garage and roofs on all the other outbuildings. I installed the plumbing and the electricity. I built the kitchen. I grow a garden and I forage for herbs and wild apples to feed myself year round. I do all of this myself. I'm aware that all of this makes me sound like a rugged man or something . I'm not. I'm definitely a female. I like to make and wear dresses. I also know that I am bragging. I'm bragging to show that a person can overcome illness and keep going. I survived breast cancer and the treatment of it. I survived MAC , and the treatment of it. Those things got me down.. yes they did and I battle depression but I manage to pull myself back up and keep going.

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Again, fantastic.
You described common sense, energy, will power, knowledge, time well spent, and great accomplishments. All that makes me think of the song "I can do anything better than you" from the show "Annie Get Your Gun."
Barbara

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egayle187 | @egayle187 | Feb 5 6:49am

I was successful in keeping MAC and bronchiectasis at bay for 10 years. Newest infection is pseudomonas and antibiotics plus 3 months using oscillating vest are clearing it up slowly. Bronchiectasis has now damaged both right and left lungs. I was treated with steroids for out of control asthma for 6 months before getting a bronchoscopy. First sputum sample had no organisms since the infection was so deep. I suggest everyone should remind the doctor that no organisms in sputum doesn't mean there is no underlying infection when there is a history of bronchiectasis.

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1 reply
laureltn | @laureltn | Feb 5 6:54am

Hi, Bayarea58! That was me. In 2020, while on the Big 3, I took Aerobikas and used them once a day, sterilizing when we got to a town. In 2021, I did the same for several months. In 2022, however, we had our car specifically so I could bring more airway gear/sterilizers. I brought my PariS Trek with its battery and saline on trail, and I would nebulize every morning before we left camp. We would get to town every third night as a rule, and I'd sterilize everything and charge the batteries then. We do hike typically 10 to 15 miles a day with lots of elevation, so plenty of cardio daily as well.

When we went did a 6-week trip in New Hampshire, Maine and Canada in 2023 while I was on Arikayce, we had purchased a small travel trailer because I needed to refrigerate it. I did my normal full routine every morning before we took off to hike. I sterilized my gear every day in the trailer. It worked out great!

For any backpacking trips we take going forward, I might have to bring a second battery for the PariS Trek if we were out more than 3 days, but that wouldn't be too much extra weight. Typically I will do my airway/nebulizing very early before we hit the trail the first day, then I can do two days in the woods, and on the fourth day if the batteries are dead, I can do airway once we hike out and I can plug it in. It takes a little planning, but you can usually figure the logistics out for a 4 to 5 day hike, longer if you want to carry extra weight.

Laurel

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nana43 | @nana43 | Feb 5 7:32am
In reply to @scoop "That's a great success story! Curious if you have to take your airway clearance gizmos with..." + (show)
@scoop

That's a great success story! Curious if you have to take your airway clearance gizmos with you when you travel (nebulizer, saline, water filtering, etc)?

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Hey!
I have a Lifestraw pitcher that I use religiously and take with me on all travels. That is the ONLY water I consume-including coffee, iced tea, even brushing my teeth. I only use nebulizer when sick and exercise is my main airway clearance.
I am 61 years old and have been into fitness my whole life, so this works for me.
Hope that helps!
Dee

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nana43 | @nana43 | Feb 5 7:37am
In reply to @bayarea58 "@nana43 @scoop I am also curious about those who do long hiking trips. @nana43 were you..." + (show)
@bayarea58

@nana43 @scoop I am also curious about those who do long hiking trips. @nana43 were you camping during the 18 day hiking trip or staying in lodging? Do you do AC with all the bells and whistles @scoop mentions, and if so, how does that work on a 18 day hiking trip? I recall another poster who was hiking the Appalachian trail while on the Big 3 and wondered how she was managing her AC on such journey. I guess my assumption was that she was relying solely on the daily exercise (with breathing techniques) for airway clearance but didn’t think to ask at the time.

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Hey-
My trip was staying in a hotel for 2 nights at a time traveling non-stop—we covered 5000 miles in 18 days.. We were up at 6 AM and back at 10 PM living out of a suitcase pretty much. The hiking and exercise was my only airway clearance, that helps through my day-to-day life as well. Dee

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blm1007blm1007 | @blm1007blm1007 | Feb 5 1:34pm

Hello hikers.
Never having done all that it was interesting to read your posts.
Thanks for the education of some of what it entails.
Happy trails, happy hiking and enjoyable fresh air.
Barbara

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scoop | @scoop | Feb 5 3:17pm
In reply to @coffcoff "If you were to pay out of pocket for Arikayce it would set you back $15,000..." + (show)
@coffcoff

If you were to pay out of pocket for Arikayce it would set you back $15,000 a month. I found this out when my secondary insurance changed and they were denying me the Arikayce I had been on for 7 months. Fortunately my doctor got it straightened out by writing a pre-authorization but it was a hassle. So, bottom line is, I doubt that insurance wants to fork out that kind of money if the cheap stuff works. Always comes down to money, doesn't it?

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Yes, follow the money!

In Wall Street News. Insmed is hoping to be what Dupixent is to asthma, or in their case what Brensocatib is to bronchiectasis. It will be the first ever pharmaceutical for bronchiectasis. A novel drug not just a change in molecule from an existing drug. Also makers of Arikayce.

Insmed issues preliminary revenue results, guidance for Arikayce

Insmed (NASDAQ:INSM) reported preliminary 2024 revenue results for its drug Arikayce and issued 2025 revenue guidance.

The drugmaker said 2024 revenue for Arikayce was approximately $363.7M, which exceeded the upper end of the company's guidance range. For 2025, Insmed (NASDAQ:INSM) is expecting global Arikayce revenue of $405M to $425M.

The drug developer said it also anticipates launching its drug brensocatib for the treatment of bronchiectasis in Q3 2025, pending FDA approval and the granting of priority review.
Insmed also now expects to report topline Phase 2 data for TPIP in patients with pulmonary arterial hypertension in mid-2025.

Topline data from a Phase 3 study of Arikayce in the treatment of MAC lung disease is expected in Q1 2026, while dosing in a study of its gene therapy INS1201 for Duchenne muscular dystrophy is expected to begin in the first half of 2025, according to a statement.

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becleartoday | @becleartoday | Feb 6 8:02pm
In reply to @egayle187 "I was successful in keeping MAC and bronchiectasis at bay for 10 years. Newest infection is..." + (show)
@egayle187

I was successful in keeping MAC and bronchiectasis at bay for 10 years. Newest infection is pseudomonas and antibiotics plus 3 months using oscillating vest are clearing it up slowly. Bronchiectasis has now damaged both right and left lungs. I was treated with steroids for out of control asthma for 6 months before getting a bronchoscopy. First sputum sample had no organisms since the infection was so deep. I suggest everyone should remind the doctor that no organisms in sputum doesn't mean there is no underlying infection when there is a history of bronchiectasis.

Jump to this post

It’s been three years since I cleared MAC without antibiotics. Along the way, I had a haemophilus infection, which I successfully treated with antibiotics. I attribute my continued health not only to consistent airway clearance but also to a holistic approach to self-care—daily exercise, maintaining a BMI of 20.5, eating nutritionally dense food, and prioritizing stress reduction.

Warm regards,
Linda Esposito

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