Did your MAC symptoms improve once you started Big3?

Progress is measured in months and years. Expect some stabilization at first

What is Big3.

The 3 most common antibiotics for MAC, taken for 12-24 months, either 3 times a week or daily depending on severity of your condition.
They are azithromycin (or clarithromycin), ethambutol and rifampin (or rifabutin).
Have you been diagnosed with MAC or Bronchiectasis?

I thought it did but maybe it was a placebo effect.
Unfortunately, after 7 weeks I had to stop them because of side effects.
Had chest CT with no improvement.
Docs tell me it takes a long time to see improvement.
Even when you become negative for MAC, chances of reinfection is 50%

Hi
I’m avoiding the TB drugs ( Big 3 ) due to the possible side effects on my eyesight, hearing, skin, liver GI tract, cardiac and kidney function etc. with the likelihood of only 30% conversion rate and possible re infection with another MAC strain via the environment ( hot water/ shower head, soil, local streams etc and maybe the Bird Feeder too. )

I was a student nurse in the 60’s and administered these drugs in an infectious disease unit to patients with TB and two had Leprosy. And these are the main drugs prescribed for Non Tuberculous Mycobacteria ( not much progress then)
I have ‘ moderate Bronchiectasis and Mac ( chimera and intracellare) which I believe are ‘ slow growers’
I’m doing daily airway clearance with 7% saline, Acapella etc.
I am not breathless, minimal cough and sputum ..at the moment and feel ok with the help of Encore nutritional supplement.
Thanks to this group I am keeping up to date on NTM ( MAC ) and online lectures from Specialist Respiratory Practitioners which has helped me come to this point in my own management.
Has anyone done any research on patient survival rates with Nodular MAC who have not taken the Big 3?
Stay as well as you can. 🤗
SP

I went to your profile and noted : "I was diagnosed with Bronchiectasis March 2023, then pseudomonas ( now resolved ) now MAC 1 - watch and wait big 3 + pending."
Does that mean you were able to eliminate pseudomonas without medicataions?
How do you think you were able to resolve the pseudomonas???
OR
do you think, maybe, might..... testing gave a false positive, if that is possible.
I am one of those who is still hesitant to take the two antibiotics prescribed for Mac...Intracellare due to not wanting to compromise that which is still working well at 82...hearing, eyesight etc. etc. So far since actual diagnosis in 8/2022 the Mac...Intracellare ( I was bringing up a small deep yellow green mucus for a couple of years prior to diagnosis and have not had that color for quite some time now mostly clear or very light in color) is all that has been showing up in my sputum viles and I have not been told I have nodules or cavities. Doing my best to keep the airways clear and thankful that my PFT is off the scale in the right direction. Many tiny mucus plugs come up and out in the late afternoon to evening hours.
Barbara

Hi Barbara
I had the pseudomonas twice last year and it was successfully, treated with clarithromycin meds and colymycin inhalation. But I also had 2 Bronchiectasis flare ups April and August and needed IV Tasobactum for two weeks at home with nurse visits daily to change the pump.
I am now more vigorous with cleaning and disinfecting all my equipment, including new tubing, filters/ mouth pieces for the Pari Boy nebuliser.
Like you I am avoiding the BIG 3 as my ‘ quality of life ‘ is ok for age 77 and I can’t see the benefit of the BiG 3 at the moment versus those ghastly side effects, eating patterns, over the counter meds etc.
I am worried about getting cavities or a faster growing MAC but now just getting on with my life and family responsibilities.
I guess I will have another CT and sputum for path ( but MAC in the UK takes 15 weeks to incubate) before I see the Respiratory Doctor in February.
Let’s be positive and see if we can make it without the Big 3 or 2 for another few years..
SP

Hello to you in UK. I have a wonderful memory of being in the UK. In London way back in the mid eighties at Christmas visiting my brother who lived there for a short time. Woke up to an unexpected snowfall the morning we had to catch a flight out to the USA....It was such a surprise when we opened the door to leave the flat. W all said in surprose "It snowed." ..... and then begain our treck to the to the train, with snow under our feet, and to the airport. All worked out very nicely however.
It is time consuming and a chore trying to keep everything from invading our lungs. I am still quietly and not nervously working my way to a decision about taking or not taking the antibiotics. Yes I wonder about that also....if we don't begin the antitibiotics....the chances of getting cavities or the infection growing more or we might just be able to keep it at bay or slow it down with what we do for ourselves. From what I read nodules and cavities can develop for different reasons and yes due to infections.
It would be great if I can hold it at bay and go another two or more years without the antibiotics since I have not had a "full" blown exacerbation and feel well. It is the need to clear the throat of what comes up nearly all day, especially after I eat.
Yes the best thing for all of us....stay positive and have faith in ourselves.
Barbara

What are some of the most common Mac symptoms people experienced when they were diagnosed or when having a flare up? For me it's the mucus in the throat that makes me clear throat and cough.

Hi Barbara and SP. I hear you re reluctance to take big 3, I was too. I also wanted to stop progression of MAC. So, I got baseline hearing test, eye exam and reg blood work. So far, 4 months in and no neg impact on hearing or sight. If you r open to considering antibiotics, those baselines can give you a greater sense
Of security.