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

@jnmy I'm not a scientist or statistician, so I can only give you an answer from my own experience.

In 2018 I was diagnosed with nodular Bronchiectasis, MAC and Pseudomonas after being ill for roughly 2-3 years. (It was previously, repeatedly diagnosed as chronic bronchitis complicated by Asthma and treated with short courses of antibiotics.)

I was treated first for Pseudomonas, then for a year and a half with the Big 3, all the while doing airway clearance daily. After 12 months, the meds were increased to daily and I started using 7% saline nebs. Daily meds just about did me in, no Arikayce yet, slightly improved CTs and mixed sputum cultures. At 18-19 months, with the blessing of my ID, pulmo and primary docs, I stopped the antibiotics to let my body rest. I continued daily airway clearance with 7% saline and a couple years later, daily Symbicort was added to my routine.

Surprise! Six months later my CT had less evidence of infection and my health was improving. That was 5 years ago this month. As of December 2024, my CT is stable with no evidence of infection - just scarring from the past. I was told to continue daily airway clearance, but I could discontinue daily 7% saline; just to immediately start again if I sensed and exacerbation beginning. I cannot produce enough sputum for a culture, so will probably have an induced one next December.

I have had on average one exacerbation per year since stopping the antibiotics, only 2 serious enough for short courses of steroids and antibiotics. I still cough - and it is productive - just not enough to produce viable samples. I still have occasional shortness of breath because of my asthma.

So I asked my pulmonologist "Am I cured?" She said in her opinion "You are cured of the original MAC and Pseudomonas infections. But because of the Asthma, Bronchiectasis and lung scarring, you will always be susceptible to reinfection."

Has anyone else had a long period free of infection after antibiotic treatment?

PS I think the real game-change in Bronchiectasis management has been the increased emphasis on saline nebs and daily airway clearance. This forum has many more members who manage MAC without antibiotics since the emphasis began about 5-6 years ago. So, if you are going to look for research, be sure to note if they are following people who do these.

There are so many variables so answers are nearly impossible. Length of the infections, treatment type and length, antibiotic sensitivity. family history and alpha-1, copd presence, cavitary disease, patient exercise, lung perfusion/ventilation. Pulmonary fungal infections after Mac are becoming increasingly common.

Thank you for the responses. The variables make the response to my questions almost impossible but I appreciate the sharing of personal experience and knowledge. I would hope there is data too, but that may be difficult to gather given those Variables that Rick mentioned. I didn’t realize that the emphasis on airway clearance has only been a fairly recent phenomenon.

I did find a new article from the European Respiratory Review from April 2025. The research focuses on neutrophil inflammation and the potential need for novel therapies that could improve outcomes.

It’s a lengthy read and with no scientific background, some of the details are beyond my understanding.

Chronic infection seems to be a common problem prior to diagnosis of Bronchiectasis and the researchers state BE is more prevalent today, perhaps because of earlier detection with an understanding of why early detection is important.

How many of us had symptoms and findings on X-rays that weren’t further investigated through CT scan? At least that may be changing!

Eur Respir Rev. 2025 Apr 2;34(176):240179. doi: 10.1183/16000617.0179-2024
Copyright and License information
FIGURE 1.
“ The vicious vortex in bronchiectasis. The vicious vortex in bronchiectasis consists of four components, namely chronic airway inflammation, airway destruction, impaired mucociliary clearance and chronic airway infection. All components of the cycle interact with and influence one another. Each of these components represents a potential aetiological entry point for conditions that can lead to bronchiectasis (e.g. allergic bronchopulmonary aspergillosis (ABPA) leading to chronic airway inflammation). IBD: inflammatory bowel disease; NTM: nontuberculous mycobacteria.“

This is the Abstract of the article I mentioned:

“Neutrophilic inflammation plays a key role in the pathophysiology of bronchiectasis. As there are no licensed therapies to treat bronchiectasis, novel therapies that target neutrophilic inflammation may be beneficial for patients with the disease.”
https://bit.ly/3EcbqgK

@rstel7272 I have noticed in reading on this forum and others that many say after taking the Big 3 for MAC that they then developed Aspergillosis. I wonder if somehow taking the Big 3 causes you to be more susceptible to this or it is just circumstances?

Fungal infections after MAC? Do we know why?

@cd33 Also I wonder if the fungal infections after MAC occur with more frequency if the MAC was treated by the big three antibiotics.

Or would fungal infections be as frequent in the case of someone who is living with MAC, but doing airway clearance, breathing exercises, etc or has in fact cleared MAC through these interventions ( without antibiotics) but still was unfortunately susceptible to fungal infections. I’m sure there is antedoctal evidence that could be gathered.

Perhaps it all depends on the three types of antibiotics, the length / duration of time taken and the frequency throughout the week. Likely other factors also impact the results.

Still, some general data collected from around the country / world should indicate whether people who are taking 3 antibiotics for 12-18 months because of MAC, leads to a greater chance of fungal infection afterwards?

Good questions. MAC is enough for me. If I end up with fungal infections after treatment or during, I’ll give up this regime and I won’t do it again and again. Will have to take consequences. What’s the point of treatment if it brings more with it! The frustration!!!!

@cd33 The numbers may be increasing but perhaps they are still relatively small. There must be research being done on this some where?

I’m sorry you have to deal with MAC and hope that you never have a fungal infection, at any time.

We can hope that new antibiotics might better target the bacteria with fewer side effects, or new medication that will help prevent our lungs from being so susceptible to these nasty bacteria settling into our lungs in the first place.

For now, I’ll keep doing airway clearance etc!

Thank you! We can only hope a better treatment comes sooner than later.