Is there any successful story ?

Posted by helen1000 @helen1000, 2 days ago

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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I was thought to have MAC based on CT’s, but cultures were negative and I have no personal story. However, there are a couple previous threads that showed up in search.
https://connect.mayoclinic.org/discussion/mac-lung-cavitary-disease/

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You seem to have a high bar for success. I measure mine by quality of life, so by my definition then I am a success.

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Thank you guys. If we put hope on new antibiotics, will that be realistic?

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I do not know what your definition of success is, but, despite setbacks over 13 years lasting anywhere from a few weeks, to nearly a year, including a hospitalization, I was able to work, ride a bicycle 3000 miles a year, ski, go on several vacations, and enjoy my family, things that were difficult to do before I embarked on my current treatment. Of course, over the years my infection has developed resistance to a few of the antibiotics I had and we experimented to find out which antibiotic would be effective to encounter the new challenges. Still, I never carried an oxygen bottle around and consider any problems. I have now due more to age (70) than Bronchiectasis. The key to my recovery and current mostly satisfactory state of health, is a team of physicians and their assistance who take me seriously when I have a complaint and concerns about medication. That does not mean I always win the argument, but I feel listened to and know they have my best interest at heart.

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@spectrumcyclist

I do not know what your definition of success is, but, despite setbacks over 13 years lasting anywhere from a few weeks, to nearly a year, including a hospitalization, I was able to work, ride a bicycle 3000 miles a year, ski, go on several vacations, and enjoy my family, things that were difficult to do before I embarked on my current treatment. Of course, over the years my infection has developed resistance to a few of the antibiotics I had and we experimented to find out which antibiotic would be effective to encounter the new challenges. Still, I never carried an oxygen bottle around and consider any problems. I have now due more to age (70) than Bronchiectasis. The key to my recovery and current mostly satisfactory state of health, is a team of physicians and their assistance who take me seriously when I have a complaint and concerns about medication. That does not mean I always win the argument, but I feel listened to and know they have my best interest at heart.

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You did really really well! Do you have MAC or just BE? Seems great care, exercise, family support and even work are the key!! I give you the best prayer and wish you continue doing great!

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Per this news there is a better drug than ethembutol.
https://www.sciencedirect.com/science/article/abs/pii/S0040402024004800
New antibiotics against MAC/MAI

- Total syntheses of mavintramycin A and its structural analog, cytosaminomycin C, and evaluation of their antibacterial activities against Mycobacterium avium and Mycobacterium intracellulare

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@helen1000

Per this news there is a better drug than ethembutol.
https://www.sciencedirect.com/science/article/abs/pii/S0040402024004800
New antibiotics against MAC/MAI

- Total syntheses of mavintramycin A and its structural analog, cytosaminomycin C, and evaluation of their antibacterial activities against Mycobacterium avium and Mycobacterium intracellulare

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The news here is that they have found so far, mavintramycin A works on a certain strain of NTM in silkworms, and on M. avium implanted in mice.
https://journals.asm.org/doi/10.1128/aac.00917-23
These are very preliminary steps that look promising, but typically at this stage we are 5 - 10 years from an new therapy - let's hope it works out!

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I think when you're first diagnosed, the enormity of NTM infection and bronchiectasis can be overwhelming and it's normal to want reassurance that you'll get truly "cured." There are people in my support group who have gone over five years without reinfection. There's also people who, although they have diffuse bronchiectasis in both lungs, never get an NTM.

The new drugs coming on the horizon and in trials are potential gamechangers. Brensocatib should be released before year's end. Arina-1 will hopefully see phase 2 trials in non-CF bronchiectasis patients. Arikayce has helped many people convert who were unable to before. If your doctor hasn't tested you for CF gene mutation and Alpha 1 deficiency, that information could be really important, along with ruling out GERD.

I was totally asymptomatic at diagnosis, and for a while I had wished I hadn't found out (incidental finding on a chest CT). But after the shock wore off, I realized knowledge is power, and knowing the things that could potentially cause NTM infections and how to avoid them is huge. I've made it my goal to be as proactive in educating myself and making good decisions in the balance of daily life.

Because I am an overachiever at most things, I had to treat MAC twice. We'll never know if it was an indolent original infection or a reinfection (which is quite possible because I was hiking 1100 miles on the Appalachian Trail when I finished the Big 3 the first time). I am clear now, and it's been 8 months since I finished medications. Every month is another small victory for me! I don't think we can ever let our guard down, but we can live full, productive, happy lives.

Best of luck!

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@sueinmn

The news here is that they have found so far, mavintramycin A works on a certain strain of NTM in silkworms, and on M. avium implanted in mice.
https://journals.asm.org/doi/10.1128/aac.00917-23
These are very preliminary steps that look promising, but typically at this stage we are 5 - 10 years from an new therapy - let's hope it works out!

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Thanks so much for elaboration Sue! Yes that is some hope in the coming 10 years!! The technology - gene editing is also on the way. I remember that when I was 10, I never know there is laser surgery for shortsightedness. After 10 years, it is so effective for everyone. Hopefully same for NTM treatment!

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