@letsjustbreathe if you are a patient at NJH, they should be advising you on all the potential risks/side effects with the medications. You can also look up the information for each drug via the internet. As others have said, everyone is different, and no one can predict what your journey will be like in terms of side effects. I am sure some have been pleasantly surprised that their drug journeys were relatively benign. I was a little surprised by the tough time I had with Arikayce. Again, each of us is different. The screening tests @sueinmn emphasized is because, as your doctors should have advised you, ethambutol has a risk of vision loss, azithromycin has a risk of hearing loss. These are relatively small risks but that is little consolation for those who experience them. These screening tests hopefully catches issues early, which hopefully helps reverse some or all of the damage. There are also EKG and blood work screening protocols. Those should be written out in the notes of your NJH doctor and if you are too far out from treatment that they haven’t included them yet in their notes, just ask your doctor for them. Certainly there are those who for various reasons decide not to treat. Some even with advanced disease. That is a decision only you and your doctors can make. But again, no one can predict your journey. Most of us who have made the decision to treat did so with much trepidation, knowing the risks, hoping for the best, but as you say, preparing for the worse. And for me, preparing for the worst meant staying vigilant with the screening protocols and my own “systems check” so when something seemed off, we caught it quickly and adjusted. If anyone has a better way of getting through this drug journey, I am all ears (or rather, eyes!) Good luck @letsjustbreathe! These choices are not easy as many of us know all too well.

@letsjustbreathe Even long-term pseudomonas can respond to antibiotic therapy, but at low load like you show, docs may choose not to treat.
But what loads do your MAC cultures show? Not everyone needs treatment.
And what are you doing, aside from antibiotics, to fight off the mycobacteria?

@letsjustbreathe I would try to keep an open mind about the antibiotics. I was also 61 when diagnosed with aspergillosis and MAC. Since I was having symptoms of fungal infection they treated me with an antifungal first, Voriconazole. I did watch and wait a few months then started the big 3 for MAC, azithromyacin, ethambutol and rafampin. I started following a high calorie diet prior to antibiotics since I knew that weight loss was an issue for most. As mentioned on this post I included a Greek yogurt daily and a probiotic. Due to rafampin’s interaction with one of my other meds I stopped that and started Arikayce, an inhaled antibiotic. GI side effects improved after about 3 weeks of taking the antibiotics. I still get some occasional nausea that resolves in a couple hours. I had my first negative MAC culture recently. So, hoping another 12 months of meds. If your side effects are more severe your doctor can make adjustments to find a plan that works for you. Best of luck with your journey. We are all here to help support!

@letsjustbreathe I read about the antibiotics. It is a worry to me . I have a history of C Diff. It is the 027 strain . It is a fast moving violent strain. I had hand surgery 10 days ago. I did stipulate no antibiotics . But ?? I am going to order the hospital records to see what meds they used on me at surgery . I am having symptoms now . It is always the start of the weekend it seems, when I need tests and prescriptions . I am trying to hold out until Monday . I have severe emphysema. These two things do not go together well . Blessed Be All of You. Crystalena