Is MAC a disease where there is remission but ultimately rarely a cure

Posted by jnmy @jnmy, 5 days ago

@fdixon63 recently posted about MAC being in remission and someone mentioned that they had never heard of MAC being referred to as ‘in remission’.

A few questions :

—This may be a very complicated question but is one ever truly cured of MAC, or is it more likely that using the antibiotics (or perhaps only airway clearance? ) eventually leads to negative sputum tests, and lungs that are in remission?

Good airway clearance etc seems to have some people free of MAC for years, but others have been on the Big 3 antibiotic treatment two or three times.
—When this happens is it usually associated with other issues that compromise the lungs?

—Are there statistics that show the percentage of people where MAC unfortunately returns?

And finally,
— Is MAC going to be inevitable over a decade or two, if someone has mild Bronchiectasis even though they do good airway clearance etc ?
— Do we have any statistics to shed some light on it?

Too many questions likely.
I need to do some research but thought maybe I’ve just missed something here!
Thanks.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sue, Volunteer Mentor | @sueinmn | 1 day ago

In reply to @cd33 "Bugger 🥴" + (show)

Don't rely too much on AI - you don't know the source or reliability of the data from which they are drawing conclusions.

cd33 | @cd33 | 1 day ago

In reply to @sueinmn "Many treatments are terrible- chemo, antibiotics, even the current very painful PT on my shoulder. That..." + (show)

Well said, however, you said if it is vital to healing! It is still a trial of some sort not a given to heal yet. Help, yes maybe? Correct me if I’m wrong? I agree with what you said but we are all different. My dad refused chemo, I have friends who said they wish they never agreed to chemo. I don’t want to be negative, these are all personal choices we make. When I comment, they are my feelings, rest assured. I am not advising anyone else here to not try what’s on offer. We all have different strengths, some cope, some don’t. Every individual must choose their own path!

cd33 | @cd33 | 1 day ago

In reply to @cd33 "Well said, however, you said if it is vital to healing! It is still a trial..." + (show)

And I’m very grateful to all those who decide to take these treatments and share their side effects! All power to each of you. I wish you all well in your journeys and pray for good outcomes in all new treatments.

jnmy | @jnmy | 1 day ago

In reply to @sueinmn "Many treatments are terrible- chemo, antibiotics, even the current very painful PT on my shoulder. That..." + (show)

@sueinmn I agree with you. I believe in the antibiotic treatments if pulmonary tell us it is necessary. People would now also be encouraged to continue their airway clearance etc.

Sometimes there just aren’t any other options and to not include antibiotics in treatment, would definitely mean more scarring and worsening of disease in some cases.
Thanks for the update of latest news about Bronchiectasis.

As more cases are confirmed around the world, more research dollars and attention might be directed to improve the lives of people with Bronchiectasis and lessen the burden of cost to the healthcare systems. I see that mentioned in many articles.