I’m probably repeating what some others have said but I had a couple of thoughts about your post. You say your CT is showing improvement but you are still positive for Mac. Has the amount of bacteria in your sputum samples (AFB) changed? They can go as high as 4+ and as low as “few” before being negative for Mac. It might give you some hope if your bacterial count is going down.

I was on the Big 3 for 6 months before getting side effects and going off of them altogether. Besides the side effects, my bacterial count was higher after 6 months than it was when I started the Big 3 and this particular drug combination is not an option for me now.

I’ve been nebulizing twice a day for nearly 6 years now and my CTs still fluctuate a bit and my AFB also fluctuates from no Mac to 2+. I haven’t started taking medications for Mac again. Although I have had some fluctuations in health and I’m more vulnerable to catching respiratory illnesses, I feel quite well and I’ve learned to carry on with life. I believe there are more people than just me out there who are living with Mac and leading pretty normal and productive lives.

Finally, even if the Big 3 on their own don’t work for you, there are other options for drugs to take with or instead of the Big 3 together. There are also drugs in development that target Mac and other NTMs and they will hopefully be available to us before too long - so this gives us some hope regarding better treatment options for this disease.

I wish you well and encourage you to be an advocate for yourself so that you get the best and most personalized treatment that is available for you.