Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

Thanks, guess I will have to play around for the times that might work best for me. I no longer take ethambutol but do take Azithromycin and rifampin. Now they have added Nuzyra. More to play with.

I have been off antibiotics for over 4 years and am maintaining with airway clearance, 7% saline, mucus thinners, exercise and Symbicort. I have had only a few exacerbations that required either a short course of antibiotics or steroids. I have pretty good energy and stamina as long as I manage my activity level.
My hearing wasn't affected although my tinnitus became a bit worse. Don't know if it was due to meds because I have had it for over 30 years

Thanks Sue for your replay?
Did you go on the antibiotics immediately after you found out

Hello
My name is Helen
I’m glad I found this site, just knowing there are others out there with similar issues helps me know there are some people that can offer advice to me.
1 1/2 years ago I had a bronchoscopy for a very small nodule, biopsy showed + MAC. I was asymptomatic, (this nodule was an incidental finding, as a follow up CAT to rule out a inguinal hernia).
Since the procedure I have an occasional cough seldom productive. I feel pretty well.
I just don’t completely understand why it appears antibiotic therapy is discouraged. I understand there are numerous side effects, but I’m weighing that out with the end result of this disease if I do nothing.
I have done some research and am not too excited on the longevity effects on my lungs.
Any help or suggestions would be welcomed as to suggestions on medication therapy with antibiotics.
Thanks for your time
Helen

Hello Helen, there is quite a specific protocol as to when to treat MAC with antibiotics, but that doesn't mean to "do nothing" before that point. Airway clearance and 7% saline nebs can reduce the amount of infection without antibiotics. The 3 antibiotic regimen is long and difficult, lasting a minimum of 18 months. MAC is notorious for antibiotic resistance, so a single drug won't cure it. It also hides deep in the lungs and grows slowly, so many months of treatment are required to knock it out.
I'm on my phone so cannot give links, but if you wander through the MAC discussions, you can find lots of great information.

Found it! Here's a link:
https://m.youtube.com/watch?v=bcvHKHzi4Q0
Sue

Hi Suzanne,
The trial the is ongoing, but my 6 month participation ended in January. The sputum sample Dr. Winthrop had me do at the end of the trial came back negative for MAC. I see him next month, but his assistant said, "It doesn't mean I don't have MAC, but does indicate it was knocked down." I see the doctor May 3rd and am eager to hear what he has to say.
I'm still coughing and feeling tired, but that could just be the bronchiectasis.
Anna

Good Morning--It seems as though taking the Big 3 is very different for each person responding on this site so changing the times when you take your meds is occasionally necessary. In addition to MAC, I am also dealing with Valley Fever which requires daily Fluconazole which has a negative reaction with Rifampin. I take the Fluconazole, Ethambutol, and my PB Benazapril with breakfast. I take the Azithromycine at noon and then take my Atenolol and Rifampin 2 hours after dinner. I have been taking Fluconazole since June 2023 and the Big 3 since December 2023. I have tolerated all 4 meds very well. I also realize that the severity of MAC is very different for each person and I am fortunate that other than a continual long term cough which is now gone, I have been basically asymptomatic since 2007 when I was first diagnosed. Yes--2007 diagnosed with MAC at Mayo Clinic and offered treatment which I chose not to take. For me, MAC seems to be slow growing. Symptoms have always been the cough. However, since starting the Big 3, I am experiencing a severe body rash and wonder if this can be caused by the meds. I have continually worked on physical fitness, swimming, biking, walking, and pickleball to work on lung and body fitness and believe these have helped me in multiple ways. I have lost weight since starting all the meds but have stableized at 101 lbs. Overall, as an 81 year old I feel I am doing very well.

I was on the "big 3" for 18 months a number of years ago. While the treatment did not significantly abate my MAC, I did not think the drug regimen that difficult. I read that it is hard for others, but I'm not sure what the symptoms are that they are experiencing. Could someone fill me in?

I do admit that I was supposed to take 3 ethambutol at once, and I didn't know that, so I spaced them out throughout the day. My physician did not see that as a problem (but I think my new doctor does). I remember being tired from the drugs and quite crabby from them. I had dialarhoea as well. Other than that, I was fine. Because I have acid reflux (GERD), I also was on Nexium, and I sometimes felt that maybe the Nexium helped me tolerate the other medicine, but I have no scientific evidence. I also have bronchiectasis.

Today I am starting another year-long regimen with Ethambutol, Rifabutin (with Clofazimine and Amikacin to be added soon--a week or so). I have cavities in my lungs, but I do not cough up much sputum. I am scared of the Clofazimine and Amikacin. If anyone has experience with these, please let me know.

Best regards, and thanks to all of you for sharing,
Mokie

Good for you! I'm impressed by your workout regimen. Sounds fun. Sorry, but I don't know about the rash. I do know some other MAC drugs can cause a rash, but that's not relevant, maybe.

Mokie

I am 77 and was put on the big 3 2 years ago. After 9 months I was taken off Ethambutol for eye problems and Arikayce was added. After 10 months I was taken off Arikayce because of a terrible cough and dizzyness. I am still on Arzithromycin and Rifamkin with little problems but take them 3 to 4 hrs apart, Nuzyra was added this week and I get very neusas after taking it to the point where I have to lay down for half hour. Has anyone else taken this drug and had the same effect?