1. < MAC & Bronchiectasis

Anyone just stop taking the Big 3 drugs after 3 months?

Posted by Elle @ellenholm, Apr 18, 2023

My husband, 81, started -very reluctantly-the Big 3 drugs for MAC on January 12. In November 2022 he had coughed up a bit of blood, a CATscan showed mild lung changes, his sputum and bronchoscope were + for MAC, and the infectious disease doctor said, "If you were my father, I'd recommend you start the Big 3." Hmm, we asked, "Are his symptoms really bad enough to merit this arduous, longterm regimen with potentially serious side effects?" He hasn't been "up-to-par" for the past 2-3 years, but basically he's a fit, trim guy whose primary complaint is a degenerative back issue.

Doctors seem to take different approaches, with some not treating MAC but "watchfully waiting" to see how it progresses, others recommend treating it now while it is more treatable. He's had minimal difficulty tolerating the Big 3, thankfully, but we are not sure the serious risk for side effects is worth it. Anyone else out there start the treatment and change their mind? Lots of anxiety over this issue and we'd appreciate comments. Been there, done that?

Thanks!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 18, 2023

@ellenholm Elle - You pose an excellent question, and I hope others will get in on the discussion. I am sure there are many "silent quitters" out there, as this is a difficult regimen to maintain.

Here are a few questions to ponder:
Did the doctors tell you the level of infection you are dealing with?
Some indicators of severity are:
- numerous nodules, cavities or widespread opacities in the lung (indicators of long-standing or more severe infection)
- the colony count and type of NTM found (few doctors share this) which indicates severity
- how quickly the culture grew NTM (indicates more aggressive types and/or high bacteria load)
- severe cough, congestion or fever, weight loss and fatigue

How experienced are the ID doc and pulmonologist in treating NTM?
It is rare, and many docs don't see it often, so rely on "standard protocols" for treatment recommendations. My first pulmonologist had only treated 30 cases in 27 years, and was not open to exploring options, talking to NJH or listening to me.
One indicator of their experience is emphasizing the importance of baseline and regular (every 3-6 months) vision and hearing screenings while on the medications.

How experienced is the ID doc in treating lung infections in older patients? We tend to tolerate and absorb them less well, and side effects can crop up fast. Also there is a tendency to dismiss some effects as "normal signs of age" when they are a warning the drugs are too hard on the body.

After 3 months of antibiotics and (hopefully) airway clearance, is your husband feeling better or worse? Is he (or are you) noticing changes in his hearing, vision or weight? Is he eating well and managing any digestive symptoms? Does ha have more fatigue than before?

My story about antibiotics (in my late 60's) - at first I was very ill with MAC, and the need for treatment obvious. But over time, the drugs were harder and harder to tolerate, my lung images improved, but MAC kept growing in my cultures. Finally, after over 18 months, the ID doc & I, along with his phone consult to a colleague at NJH, made the decision to stop the drugs and rely on airway clearance with saline. My primary and pulmonologist agreed. That was over 3 years ago. Since then I have had a few minor exacerbations, a few tweaks to my asthma meds (the underlying cause of my Bronchiectasis and MAC), needed a few days of prednisone or antibiotics a couple times. At my 3 year appointment in December, my lung images were stable. I have regained my lost weight and (most) of my stamina.

Remember we are all different, but only you and he can make this decision. Have you discussed your concerns with the pulmonologist or his primary doc to get another point of view?

Sue

REPLY
1 reply
dammullg | @dammullg | Apr 18, 2023

I keep reading about Airway clearance with saline, my Resident at UC insists on Albuterol, but it does nothing. Suggestions on how to get her to switch me over?

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 18, 2023
In reply to @dammullg "I keep reading about Airway clearance with saline, my Resident at UC insists on Albuterol, but..." + (show)
@dammullg

I keep reading about Airway clearance with saline, my Resident at UC insists on Albuterol, but it does nothing. Suggestions on how to get her to switch me over?

Jump to this post

You might want to take a look at this article and share it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6688147/
7% saline neb have become a routine recommendation at NJH , Mayo and a number of other NTM centers.
Sue

REPLY
BlueSplashGirl/ Carolyn | @bluesplashgirl | Apr 19, 2023

I quit after 3 years and no progress plus ototoxicity from azithromycin. I hope there will better solutions in the future.

REPLY
gjaleski | @gjaleski | Apr 19, 2023
In reply to @sueinmn "@ellenholm Elle - You pose an excellent question, and I hope others will get in on..." + (show)
@sueinmn

@ellenholm Elle - You pose an excellent question, and I hope others will get in on the discussion. I am sure there are many "silent quitters" out there, as this is a difficult regimen to maintain.

Here are a few questions to ponder:
Did the doctors tell you the level of infection you are dealing with?
Some indicators of severity are:
- numerous nodules, cavities or widespread opacities in the lung (indicators of long-standing or more severe infection)
- the colony count and type of NTM found (few doctors share this) which indicates severity
- how quickly the culture grew NTM (indicates more aggressive types and/or high bacteria load)
- severe cough, congestion or fever, weight loss and fatigue

How experienced are the ID doc and pulmonologist in treating NTM?
It is rare, and many docs don't see it often, so rely on "standard protocols" for treatment recommendations. My first pulmonologist had only treated 30 cases in 27 years, and was not open to exploring options, talking to NJH or listening to me.
One indicator of their experience is emphasizing the importance of baseline and regular (every 3-6 months) vision and hearing screenings while on the medications.

How experienced is the ID doc in treating lung infections in older patients? We tend to tolerate and absorb them less well, and side effects can crop up fast. Also there is a tendency to dismiss some effects as "normal signs of age" when they are a warning the drugs are too hard on the body.

After 3 months of antibiotics and (hopefully) airway clearance, is your husband feeling better or worse? Is he (or are you) noticing changes in his hearing, vision or weight? Is he eating well and managing any digestive symptoms? Does ha have more fatigue than before?

My story about antibiotics (in my late 60's) - at first I was very ill with MAC, and the need for treatment obvious. But over time, the drugs were harder and harder to tolerate, my lung images improved, but MAC kept growing in my cultures. Finally, after over 18 months, the ID doc & I, along with his phone consult to a colleague at NJH, made the decision to stop the drugs and rely on airway clearance with saline. My primary and pulmonologist agreed. That was over 3 years ago. Since then I have had a few minor exacerbations, a few tweaks to my asthma meds (the underlying cause of my Bronchiectasis and MAC), needed a few days of prednisone or antibiotics a couple times. At my 3 year appointment in December, my lung images were stable. I have regained my lost weight and (most) of my stamina.

Remember we are all different, but only you and he can make this decision. Have you discussed your concerns with the pulmonologist or his primary doc to get another point of view?

Sue

Jump to this post

I am looking at phage therapy for my 4.3 cm Mac infection. I have a pulmonologist and ID doctor. I ask what to expect
and probable timeline if untreated. Never get an answer.

REPLY
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