MAC Abscessus, What Big 3 or 4 or 5 antibiotics are people taking?

Posted by kathyjjb @kathyjjb, Mar 20, 2025

I will soon be starting meds for MAC Abscessus that is macrolide resistant. Curious what people are taking and results?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for reneemc @reneemc

The Linezolid and Omadacycline were pills in addition to the IV meds for Abscessus
I have had 4 consecutive negative sputum cultures from the MAC I’m still taking Azithromycin Ethambutol, Clofazimine. Just stopped the Arikayce because Dr is trying to figure what is causing the hemoptysis

Jump to this post

If hemoptysis is bleeding then it was the same for me on the azithromicin/clofazimine/Amakacin combo

REPLY
Profile picture for reneemc @reneemc

The Linezolid and Omadacycline were pills in addition to the IV meds for Abscessus
I have had 4 consecutive negative sputum cultures from the MAC I’m still taking Azithromycin Ethambutol, Clofazimine. Just stopped the Arikayce because Dr is trying to figure what is causing the hemoptysis

Jump to this post

Good news that you had 4 consecutive negative sputum cultures, that’s encouraging.
Take care!

REPLY
Profile picture for janetannfaust @janetannfaust

Good news that you had 4 consecutive negative sputum cultures, that’s encouraging.
Take care!

Jump to this post

8 more 🙏🏼then I can stop the antibiotics. I’ve been on various antibiotics since 4/23

REPLY

Did you have both MAC and MAB? MAC is Mycobacterium Avium Complex and MAB is Mycobacterium Abscessus Complex. I have had 4 negative MABC cultures over the course of 3 months, and a new nodule was noted on my CT scan, last week. So, who knows what that is-just hoping it's not the MABC. I sure hope your negatives continue, sending prayers your way.

REPLY
Profile picture for kathyjjb @kathyjjb

Did you have both MAC and MAB? MAC is Mycobacterium Avium Complex and MAB is Mycobacterium Abscessus Complex. I have had 4 negative MABC cultures over the course of 3 months, and a new nodule was noted on my CT scan, last week. So, who knows what that is-just hoping it's not the MABC. I sure hope your negatives continue, sending prayers your way.

Jump to this post

Was diagnosed with both my bronchoscopy 12/22. After 8 weeks of treatment for Abscessus it never showed up in sputum again.
I have cavities that are very slow to improve. Last 4 cultures negative for AFB

REPLY
Profile picture for kathyjjb @kathyjjb

I'm so sorry "Payette". I too feel totally blindsided and I'm losing confidence in my pulmonary and worried about my local ID doctor who suggested 3 meds one being Tetracycline. She also said she would like to talk to doctors at NJH. I've read the Mycobacterium Abscessus is highly resistant to Tetracycline-which is why I'm worried. I won't get into NJH until May 20-30. They are testing my sputum but Banner already has as well. My strain (or substrain?) has the active erm gene (spelling?), so no macrolides. I also have one cavity but would not be surprised if I have 2 or more by now. I'm with you, I was really surprised about the 8 week clearing. I just need a doctor that is sure about which treatment I should start. I wish everyone the best.

Jump to this post

@kathyjjb
Kathy, where are you located? I'm in Phoenix and going to Dr. Iusum at the Banner Lung Inst.
I have Mycobacterium Abscessus. We think I got it from running a humidifier in the bedroom at night using RO water. I've now turned my water heater to high. Water is coming out at 150 degrees. I'm hoping to kill any bacteria in it since this is in our water supply in Phoenix.
NJH is supposed to be the best in the country. I wish you well and hope you can find a drug therapy that knocks it out quickly for you. Best of luck to you.

REPLY
Profile picture for djwork1 @djwork1

@kathyjjb
Kathy, where are you located? I'm in Phoenix and going to Dr. Iusum at the Banner Lung Inst.
I have Mycobacterium Abscessus. We think I got it from running a humidifier in the bedroom at night using RO water. I've now turned my water heater to high. Water is coming out at 150 degrees. I'm hoping to kill any bacteria in it since this is in our water supply in Phoenix.
NJH is supposed to be the best in the country. I wish you well and hope you can find a drug therapy that knocks it out quickly for you. Best of luck to you.

Jump to this post

@djwork1 I'm in Scottsdale. Are you on Antibiotics? Or, is your doctor waiting and watching? Are you nebulizing with 7% saline? I was only on antibiotics 3 weeks when I went to NJH and my NJH ID doctor told me my count was so low, that they would never have started the drug treatment. I send all my sputum samples to NJH, since they do counts on every culture. From May to October all my cultures were negative, and then November's culture came back positive again for MABC. Ugh. I'm still waiting on the count. Still feeling good-but I'm nebulizing 2/day.

REPLY

I've had only 1 meeting with my pulmonologist. She was waiting 6 months to see how fast it was growing. My big nodule is now 6mm. That's when she starts to get concerned. I see her next week.
I have a dry cough. No sputum at all. I have to have a bronchoscopy and lungs flushed to get a sample. I'm not on any treatment now. We'll see what next week brings.
Did you spend a week at NJH for an evaluation?
I'm just starting this journey.
I hope your Dec count is low and you're free of this soon.

REPLY
Profile picture for djwork1 @djwork1

I've had only 1 meeting with my pulmonologist. She was waiting 6 months to see how fast it was growing. My big nodule is now 6mm. That's when she starts to get concerned. I see her next week.
I have a dry cough. No sputum at all. I have to have a bronchoscopy and lungs flushed to get a sample. I'm not on any treatment now. We'll see what next week brings.
Did you spend a week at NJH for an evaluation?
I'm just starting this journey.
I hope your Dec count is low and you're free of this soon.

Jump to this post

@djwork1 Thank you. I'm keeping my fingers crossed. I was diagnosed in Nov 2024 and my PHX Pulmonologist got me started on nebulizing 2/day with 7% saline. I am very grateful to him for that. I believe I cleared it for 5-6 months due to my nebulizing. There have been limited studies on the effectiveness. I read one study that showed 25% had culture conversion for nodular infection (not including cavity disease) without antibiotics. I went to NJH in May 2025 and was there for 8 days over the course of 2 weeks. I'm so glad I went to NJH!!! My NJH ID doctor was very insistent that I continue nebulizing with 7% (not 3%). Nebulizing and Airway clearance will help you cough up sputum, so possibly you could avoid future bronchoscopies. I used to be the same was, just a dry cough but nebulizing has changed that. The Portland Clinic has just wrapped up a nebulizing study (with 7%) with a larger sample population of those with BE and NTM, not sure when it will be published but hopefully soon. You might want to message or discuss with your local doctor. Kathy

REPLY

Thank you for that info. I will definitely ask about that study and nebulizing. That's very helpful.

REPLY
Please sign in or register to post a reply.