How long before anyone has seen improvement in their MAC journey?

A few months.

@sharondig not sure what you mean by "little change" but under the 2020 treating guidelines, if your sputum hasn't converted by 6 months, you need to change up your treatment regimen. For many that may mean adding Arikayce, switching to daily Big 3 if on Big 3 only 3x a week. It is going to depend on your individual circumstances, but the thinking is that if you have not sputum converted by month 6 on your current regimen you are not likely to. As for CT changes, not everyone sees improvement on CT, it may depend on your presentation, and cavity disease is its own separate discussion. Have you discussed with your doctor the lack of change? Do they have a plan for addressing? Are you seeing an NTM specialist? I think an NTM specialist is instrumental, particularly where initial treatment is not getting results.

@bayarea58 Do you know if your doctor ordered sensitivities with the AFB culture? At one point I had been on the 3 drug regimen (this was back in 2014, maybe) with Zithromax as one of the drugs. I was on it over a year, taking 500 mg x 2 da/week and 250 mg x 3 da/week. When she finally decided to do another culture with sensitivities it came back as Azithromycin resistant. I was livid. I know things have progressed in the treatment of NTM illnesses, but this ended almost catastrophically for me. Thankfully, I was eventually referred to another doctor who was able to get me back on track and on the road to healing.

I'm not sure why but my cough disappeared after less than 2 weeks on azithromycin, rifamputin, and ethambutol and I have almost no throat-clearing after 5 weeks (it was constant for a few years).
I will likely still be on meds for a year or two--I don't want that cough to come back if I can help it. The doc did say he may let me drop the ethambutol in a couple months... the fatigue is a real problem for me.

I was on the Big 3 for nine months. Everyone is different but you have to stay on top of your doctors. You know your body best. Make sure you are journaling how you are feeling. I constantly bug my doctors.

Hi Sharon, are you nebulizing 2/day with 7% saline? My NJH ID doctor insisted I get back on 7% saline when I reduced to 3% and to use the Aerobika. Reading some good and valid questions. Do you have lung cavities? If no change, sounds like meds may need to be switched or enhanced. Has your lab done AFB Susceptibility testing? Are they monitoring the bacterial counts? The counts can tell you if there's improvement as well. Are you having low e CT's every 6 months? Maybe you can send cultures to NJH for these tests? I have lost confidence in my local testing lab, so now sending all sputum samples to NJH. Kathy

@susanrg20
Thank you @susanrg20 - journaling is a great idea. I've been meaning to restart my formerly daily journaling habit. This is extra motivation to find time for it!

@sharondig Kathy @kathyjjb made excellent points in her response. I will just offer my experience as I fully understand how disappointing it can be. I have been on Big 3 daily for 15 months and Arikayce for 14 months. My symptoms (constant cough, night sweats, fatigue, weight loss, lack of appetite) all went away after starting treatment. My CT did show slight improvement a few months back and the bacteria load has gone from 4+ (many) to 1+ (few). I switched to a new ID doctor, who has re-tested for susceptibility to the drugs. I am now waiting to get my first script of Clofazimine to replace Rifampin. It can be very disappointing, however, for some of us it takes time. Also, I have cavities, one of which is rather large, and that can definitely make it harder to convert. I continue to nebulize 7% saline 2x day and take my meds religiously. I am very happy that my one CT was slightly improved and continue to remain hopeful that I will convert to negative in the future. I know there are others who took a long time to get that negative culture. Having a good ID doctor who offers & explains options and has experience in treating MAC is crucial. Hang in there, it can be a long journey.

@mjb24
Thank you so much for your message i can’t tell you how it gave me some hope and i can’t thank you enough for taking the time to respond i appreciate you!

@kpger I think this question was meant for @sharondig but I agree susceptibility testing is key and should always be done, but recognize not all local doctors do as a matter of course. I believe all NTM specialists will automatically test susceptibility given how instrumental it can be, as you found out (the hard way). I am glad you finally got to a doctor who you have confidence in.