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

Posted by kathyjjb @kathyjjb, Mar 20 9:36pm

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.

kathyjjb | @kathyjjb | Mar 23 12:54pm

In reply to @reneemc "I still test positive for MAC after 2 years of treatment. Currently on Azithromycin Ethambutol Clofazimine..." + (show)

My doctor said maybe 15 months for Abscessus treatment. Do you have symptoms? You must be really tough, the antibiotic cocktail you took for abscessus sure sounds powerful. Linezolid can have horrific side effects and Omadacycline from what I read has a mortality rate of 2%-wonder what it is for those over 65? I'm sure glad you got rid of the Mycobacterium Abscessus.

notnancy88 | @notnancy88 | Mar 23 1:31pm

In reply to @reneemc "I still test positive for MAC after 2 years of treatment. Currently on Azithromycin Ethambutol Clofazimine..." + (show)

Are you aware that Ethambutol can affect the Optic Nerve? (eye) If you are, then you know you should have regular eye exams. Arikayce and amikacin can affect your hearing (cochlear tissue) and can cause ringing in your ears. Clofazimine can make you tan or as my pulmonologist said "make you look you have been to a resort."
I have not been on Ethambutol; but I have been on the other three.
Mycobacterium abscessus subspecies abscessus Erm 41 2years 3 months

reneemc | @reneemc | Mar 23 2:53pm

Kept trying the Linezolid but eventually switched to Rifampin . The Rifampin caused severe side effects had to go to ED.
Yes, I have regular hearing test and eye exams.
The main symptoms I deal with are constant throat clearing and I see pain management Dr for chest and back pain.

notnancy88 | @notnancy88 | Mar 24 10:03pm

In reply to @reneemc "Kept trying the Linezolid but eventually switched to Rifampin . The Rifampin caused severe side effects..." + (show)

I 'converted my Abscessus (whatever that means) after two months of IV therapy in the Spring of 2023
Now it is back. I return to UT East Texas the first week of May. I do nebulizer breathing treatments w/ sodium chloride and various airway clearance methods 2X/daily. I also have Bronchiectasis.

blm1007blm1007 | @blm1007blm1007 | Mar 24 11:01pm

In reply to @reneemc "Kept trying the Linezolid but eventually switched to Rifampin . The Rifampin caused severe side effects..." + (show)

The main symptom for me, also, is the constant throat clearing. The sputum just seems to keep on coming up into my 'throat' and more so after I eat.
I have been told by the GI doctor at NJH that I have a small hiatal hernia. This was found with the testing there. I read that a hiatal hernia can also cause overproduction of mucus and the constant need to clear the throat.
The problem is, I don't know, and how would one actually know, if it is coming from the hiatal hernia or my lungs with the Bronchiectasis/MAI. Wish they had a way of knowing and seeing it happen as it happens.
Do you have another diagnosis that might be causing the constant throat clearing?
Barbara

reneemc | @reneemc | Mar 25 12:21am

In reply to @blm1007blm1007 "The main symptom for me, also, is the constant throat clearing. The sputum just seems to..." + (show)

The Bronchiectasis and MAC. I’ve had scans and ultrasounds looking for what causes the symptoms and specifically the incredible pain.
Sent my first sputum to NJH today, hoping to get in and get some relief