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What is your Top Question about MAC and Bronchiectasis?

Posted by Sue, Volunteer Mentor @sueinmn, Mar 13, 2024

Earlier this month, a "newish" member, @sisterpulse , posed a list of questions she has as a person recently diagnosed with MAC.

I promised to share the list, but then I thought maybe many of us have that one question we would really like answered, or at least for someone to point us in the direction of the latest treatment protocols or research.

I am hoping those of you who like to do a little research, including @pacathy , @scoop , @windwalker , @becleartoday and @rstel7272 will join me in finding the best answers.

See sisterpulse's questions in the next post.

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

mmhadcock | @mmhadcock | 3 days ago

I would like to know how predictive CT scans are for recurrence/reactivation. I was treated w Ethambutol, Azithromycin and Clofazimine and have had negative every 3 mo cultures for a yr. My CT has no change in nodules/tree in bud, slightly worse ?cavity in rt ul.

REPLY
1 reply
jnmy | @jnmy | 2 days ago

My first question is how predictive is having other lung conditions, in addition to having Bronchiectasis, in possibly developing MAC or other NTMs in the future? @sueinmn has written that not all people with Bronchiectasis go on to develop MAC.

Second question - If BE is in most or all parts of the lungs but someone is still considered to have very mild / mild Bronchiectasis despite phlegm production, what are the chances of developing serious BE later in life, if we do our airway clearance etc?

It seems that some people have issues with flareups that create most problems with their BE. Is that age related or are there other lung issues at play, unfortunately.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | 2 days ago
In reply to @jnmy "My first question is how predictive is having other lung conditions, in addition to having Bronchiectasis,..." + (show)
@jnmy

My first question is how predictive is having other lung conditions, in addition to having Bronchiectasis, in possibly developing MAC or other NTMs in the future? @sueinmn has written that not all people with Bronchiectasis go on to develop MAC.

Second question - If BE is in most or all parts of the lungs but someone is still considered to have very mild / mild Bronchiectasis despite phlegm production, what are the chances of developing serious BE later in life, if we do our airway clearance etc?

It seems that some people have issues with flareups that create most problems with their BE. Is that age related or are there other lung issues at play, unfortunately.

Jump to this post

Those are the million dollar questions!
Coincidentally, just before I saw your post, I was on my weekly "what can I learn today" dive into Google Scholar, where I found this amazing article:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11211698/
I will summarize (briefly) but encourage each of you to read it for yourselves. Warning: This is not and easy read! But, it answers many of your questions and mine.

My takeaways
- With all of the tests available, ongoing studies and new treatments, more doctors that before are recognizing Bronchiectasis.
- Treatment protocols are rapidly changing, and new drugs and regimens emerging - but only those dedicated to treating Bronchiectasis, Pseudomonas and NTM are going to be able to keep up. So it is more important than ever to have your care directed by an expert.
- The number of links between BE and other conditions/diseases is better understood than ever (See figure 2.)
- Pseudomonas is increasingly demonstrated as predictor of poor outcomes with Bronchiectasis.
- Airway clearance, hypertonic and isotonic saline, pulmonary rehab and exercise are increasingly linked to successful outcomes.
Here is one quote: "... Notably, the results of the study emphasise that long-term airway clearance can ameliorate the clinical course of patients with bronchiectasis, beyond reducing daily symptoms and improving HRQoL.

Overall, studies have shown mixed results regarding which airway clearance technique is superior. This is likely due to the heterogeneity of bronchiectasis patients with regard to varying airway calibre, unique sputum properties and individual respiratory strength. From this perspective, the authors recommend that airway clearance management be tailored to the patient's needs, as the most effective airway clearance technique is one the patient will use consistently and successfully over time.

Airway clearance alone may be sufficient to manage patients’ symptoms and improve their quality of life, but many patients have ongoing symptoms or exacerbations despite effective airway clearance. In this situation, it is recommended to add additional symptomatic and/or preventative treatments in a stepwise manner until disease control is achieved..."

Finally, the "heterogeneous nature" of bronchiectasis is stressed - therapies truly need to be tailored each patient.

Happy reading all, I am going to try to download the entire text and run it through an AI tool to simplify, but this will be an experiment, and I am in my "entertainment week" at home - 3 more groups coming between now and Monday.

REPLY
1 reply
jnmy | @jnmy | 2 days ago

@sueinmn Thank you for this detailed summary. You’re so helpful and kind in providing such detailed responses to our questions. I will read the article and glean what I can from it. Enjoy your week of entertaining!

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | 1 day ago
In reply to @jnmy "@sueinmn Thank you for this detailed summary. You’re so helpful and kind in providing such detailed..." + (show)
@jnmy

@sueinmn Thank you for this detailed summary. You’re so helpful and kind in providing such detailed responses to our questions. I will read the article and glean what I can from it. Enjoy your week of entertaining!

Jump to this post

Oh my gosh! When I went back to this post this morning, I found the WRONG LINK!
Here is the correct study:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11211698/
I will ask the moderators to fix my post!
So sorry for the error.

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | 1 day ago
In reply to @mmhadcock "I would like to know how predictive CT scans are for recurrence/reactivation. I was treated w..." + (show)
@mmhadcock

I would like to know how predictive CT scans are for recurrence/reactivation. I was treated w Ethambutol, Azithromycin and Clofazimine and have had negative every 3 mo cultures for a yr. My CT has no change in nodules/tree in bud, slightly worse ?cavity in rt ul.

Jump to this post

In general, scans are not predictive, they are diagnostic and monitoring tools. If you have a cavity, these are quite important because destruction of lung tissue (cavities) are predictive of "worse outcomes" in bronchiectasis - meaning risk of reinfection, or eventual need for surgery.

What does your pulmonologist say about further diagnosis (bronchoscopy) or treatment?

REPLY
annagh | @annagh | 1 day ago
In reply to @sueinmn "Those are the million dollar questions! Coincidentally, just before I saw your post, I was on..." + (show)
@sueinmn

Those are the million dollar questions!
Coincidentally, just before I saw your post, I was on my weekly "what can I learn today" dive into Google Scholar, where I found this amazing article:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11211698/
I will summarize (briefly) but encourage each of you to read it for yourselves. Warning: This is not and easy read! But, it answers many of your questions and mine.

My takeaways
- With all of the tests available, ongoing studies and new treatments, more doctors that before are recognizing Bronchiectasis.
- Treatment protocols are rapidly changing, and new drugs and regimens emerging - but only those dedicated to treating Bronchiectasis, Pseudomonas and NTM are going to be able to keep up. So it is more important than ever to have your care directed by an expert.
- The number of links between BE and other conditions/diseases is better understood than ever (See figure 2.)
- Pseudomonas is increasingly demonstrated as predictor of poor outcomes with Bronchiectasis.
- Airway clearance, hypertonic and isotonic saline, pulmonary rehab and exercise are increasingly linked to successful outcomes.
Here is one quote: "... Notably, the results of the study emphasise that long-term airway clearance can ameliorate the clinical course of patients with bronchiectasis, beyond reducing daily symptoms and improving HRQoL.

Overall, studies have shown mixed results regarding which airway clearance technique is superior. This is likely due to the heterogeneity of bronchiectasis patients with regard to varying airway calibre, unique sputum properties and individual respiratory strength. From this perspective, the authors recommend that airway clearance management be tailored to the patient's needs, as the most effective airway clearance technique is one the patient will use consistently and successfully over time.

Airway clearance alone may be sufficient to manage patients’ symptoms and improve their quality of life, but many patients have ongoing symptoms or exacerbations despite effective airway clearance. In this situation, it is recommended to add additional symptomatic and/or preventative treatments in a stepwise manner until disease control is achieved..."

Finally, the "heterogeneous nature" of bronchiectasis is stressed - therapies truly need to be tailored each patient.

Happy reading all, I am going to try to download the entire text and run it through an AI tool to simplify, but this will be an experiment, and I am in my "entertainment week" at home - 3 more groups coming between now and Monday.

Jump to this post

Thank you so much for this and all you do for this group. You are amazing!
Anna

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