Does anyone take Azithromycin and Ethambutol every day?

@cfalci So sorry to hear you got reinfected. That is one of my big questions, is it really worth it if the MAC is likely to come back? I guess that depends on how well one tolerates the drugs. I wish you well.

I’m not even 60 yet. The meds make me tired. And it’s been ten years almost. Would like it to just go away. But that’s not likely.

@annagh YES! The MAC may come back, but it may not - I am 6 years MAC-free after almost 2 years of meds (6+ months daily.)

The old numbers were about 50% eventually got reinfected, but now with 7% saline, more knowledge about airway clearance, and protocols for managing exacerbations I bet reinfections are lower.

It IS worthwhile to try no meds, just saline, airway clearance and watching, to see if it will improve. Then if it gets worse then antibiotics. But if you already have cavities, nodules, and symptoms, just waiting isn't really an answer.

I truly believe I would not be alive today without treatment, but here I am living my best life...

@deestrada So happy for you! I will pray they remain negative and you can get off the meds.

@beverlylynn My cavities are 6.1 x 3.1 cm, 3.2 x 1.9 cm & 1.5 x 1.4 cm (reduced from 1.9 x 1.8). It is encouraging to at least see some improvement in one of them. Have your cavities shrunk at all since you started meds?

@sueinmn I was told to take the Big 3 three years ago, but after seeing a video of Dr. Winthrop discuss “watch and wait”, I managed to get an appointment with him. He agreed that I could do that, but said I would likely eventually need treatment. I was on the clofazamine trial in 2023, got the placebo, but saline and airway clearance seemed to be keeping me stable. In 2024 and 2025 all but one sputum sample, including the last 2, have been negative for MAC. I have never had an acute exacerbation, just a chronic cough which gets better and worse, sometimes accompanied by low grade fever. I have nodules, and areas of inflammation, but no cavities. Dr. Winthrop and my pulmonologist both noted my CT scan in September looked pretty stable, so this suggestion that I start meds now has taken me by surprise. Is it really going to make me feel better? And given that my decline is slow, how necessary is it?

I know you, nor anyone else on this list can advise me on that, and I may need one more conversation with the doctor before I start the meds, but I do appreciate having a place where I can raise these questions.
If I do start the drugs and the side effects make me miserable, I will probably need a lot of convincing to continue. But maybe I’ll be one of the lucky ones, who does well on the meds.

Thanks for the feedback and support. You are amazingly generous and helpful.

Hi, I’m new to the group but not to MAC. I’m a 68 yr old male in the Philly area and I was diagnosed with MAC 10 years ago. I’ve been on Azithromycin, ethambutol and rifampin 3x a week for 10 years until this year. It broke thru to a new level (my fault, I got lax with my medication). My doctor at the Harron lung center reduced my dosage but went to every day, and put me on Arikayce. Hopefully that will keep it under control.
This fall I also put in a soft water system and a 30,000 joule UV light to kill bacteria before it enters our house. I’ll let the group know if it helps. Trying anything and everything.

@sonofrio Wow, 10 years is a really long time! Do you do daily airway clearance in addition to the antibiotics? Nebulized 7% saline has been shown to help slow/stop the growth of MAC as well - do you use it?

@yardsend
I am taking 500mg azithromycin, 1,000 mg ethambutol, and 600 mg rifampin daily, for MAC with cavities plus Amakacin 3 times a week IV using a PICC line - also feel better and cough gone

@lynncat
Isn't it great to feel better? Yahoo!