has anybody taken azithromycin and amikacin

I had my right middle lobe removed in January 2024 due to advanced bronchiectasis in that area. Now my pulmonary function is better than it's been since I first was diagnosed with NTM 2 years ago and I feel great. I've gained back all the weight I lost and no more fatigue. Unfortunately, the MAC is back after being off meds since June. My ID doc says the bacterial load is almost undetectable so I'm hoping I can overcome it with good airway clearance.

Any problems with it so far? My doctor wanted me to take it but after reading about the side effects I declined. Now I hear that the FDA is working on approving an inhaled version. I'd consider that if need be.

Hi. I've been on the big three (azithromyacin, rifampin and ethambutol) plus the arikayce in the special nebulizer. I've done this twice for over 2 years each, and was infection feee for a time. I had the same issues as you are facing, tho eventually they did get better. I now have MAC again and may not take the antibiotics.

I haven’t started my treatment plan yet. Took forever for njh to get my records to my doctor. I am so worried about side effects my family says don’t worry Easy for them to say

My ID provider told me that if after 4 months of the big 3 plus AriKayce and still testing positive for MAC, it would be considered a fail and at that point we would d/c all and go back to all the that I was doing before starting Big 3 & AriKayce.
I began week 12 today. This past Saturday I woke up feeling not good but great! I had been so sick for 10 weeks and was so exhausted and determined to stop all treatment and roll the dice. I spoke to my family physician and to ID about all of the “Serious but common” side effects that I was experiencing. They told me to hang in there but I honestly thought I was dying and that nobody was hearing me and my concerns. It took me saying “I quit” before I got my IDs attention and an apology. What it all comes down to is that you have to be your own best advocate even if you don’t feel up to it. No one person knows you better than you know yourself, so it comes down to you being your own subject matter expert and making sure your concerns are heard and addressed.

Are you having any side effects

I'm with your family on that one. You may not have any side effects at all. I went through an 18 month treatment and only had a little nausea and upset bowels for a couple of days, taking the big 3 three times a week. After six months and still no negative cultures I started Arikayce (inhaled amikacin) and I converted in 2 months. The worst part for me was losing my voice with the Arikayce. My NJH doc changed the dose from daily to every other day and that solved the problem. I continued treatment for a year after conversion and the worst part of all of it for me was the inconvenience of taking the Arikayce on top of hypertonic saline nebs twice a day (which of course, I still do). But really a small price to pay when you think about it.

Good luck!

Has anyone been offered surgery

I haven’t started my treatment plan yet. Took forever for njh to get my records to my doctor. I am so worried about side effects my family says don’t worry Easy for them to say