MAC Big Three Side Effects

I'm new to all of this. What are "the big three?"

The three most commonly prescribed antibiotics used to treat MAC: Rifampin, azithromycin and ethambutol. I'm very new too. We can learn together

I have been on the big 3 antibiotics now for 8 months, which in the beginning I was very hesitant on starting keeping in mind that I am 76 years old. I have been somewhat lucky that I have mostly only had nausea often and diarrhea which is mostly gone now. However, I went to my vitroretinal specialist this past week and fail my second visual field test. Because of that and I am susceptible to getting glaucoma as my mother had it and went blind she took me off rhe ethambutol as that can cause glaucoma and eye problems. I checked with my infection disease Dr and he was OK with it. This is not that common but always something to be aware of. It is scary to think about the long road ahead on the antibiotics, but it is the best way to go unfortunately. It is much better then having to take the IV course.

Thanks for your response. I agree. It is scary. I'm a nurse, so I think in some ways that makes me even more scared sometimes! I'm 57. I'm very thankful to hear from people like you. I realize everyone is different, but it helps me to know what others before me have experienced. Prayer sent for your vision and eradication of your infection. How did you deal with your nausea and diarrhea?

I have been on the Big 3 for 18 months. I started with a 3 day a week regimen, but increased to daily dosing along with Arikayce after 10 months with no sputum conversion. I had a bit of stomach upset after taking the Azithromycin and Ethambutol, but that dissipated after the first month. The only other side effect I've had is intermittent hoarseness from Arikayce.

I have been somewhat lucky in the respect that I don't get physically sick too many times but it will come on anytime, anywhere for no reason. If I am home and I lay down for 20 to 30 minutes and just rest it seems to subside a good deal. The smell of food sometimes will trigger it. It took them 3 years to finally diagnose mac in which I lost 100 lbs. I have to take vitamin B12 shots and have since gained 10 lbs. I didn't know the shots could bring back my appetite.

I was recently diagnosed with MAC as well. It's a very scary time! My doctor started me off on the azithromycin first for 5 days, then to the Ethambutol, and will be prescribing an inhaler with some medication. I'm not sure why he only prescribed me two antibiotics and not three, although there's going to be an inhaler. I guess every doctor does things different; I see a really great doctor with infectious diseases. I believe that is what most people see who have this. My main advice I can give you is to take all your meds at the same time and eat with it!!!!! Whichever is your biggest meal of the day, if it's breakfast lunch dinner. This medication is well tolerated when you eat with it. I noticed that with the azithromycin I would feel a bit nauseous not eating. I am a 52-year-old female, and I have not had any problems in the medications so far. I've been on them for about 2 weeks. I haven't gotten sick, tired, etc. As a matter of fact I had a CT scan about 5 weeks ago and I have a pretty large cavity in my upper right lobe, it was 3.2 CM at that time and I had a bunch of nodules all over the right side of my lawn. They were going to do a CT guide at lung biopsy last week but when I went to have it done they did another CT scan and everything was clearing and that wall of the cavity had been out so much they canceled the biopsy. So I guess that was all really great signs, but my doctor said that it couldn't be from the antibiotics because it was just too soon for them to really make a difference so my body must have tried to start healing things. Anyway I really wish you luck! There's a lot of people on here that are really helpful and know a lot about this stuff. ♥️

Thanks so much for your response. I hope you have conversion soon. God bless you.

Oh, my. That's a significant weight loss! I could stand to lose some weight, but that's sure not the way to do it. I'm so thankful you finally got your diagnosis. I hope and pray your treatments help. I appreciate your advice. God bless you.

Wow! that's very interesting. I have a pulmonologist who discovered the Primary Immunodeficiency AND the MAC. I've been to so many doctors, and the nurse practitioner at my pulmonologist's office is who figured everything out! As a nurse, I'm really proud of her! I'm starting Immunoglobulin G monthly infusions Wednesday. My Infectious disease doctor wants me to have a few infusions in me before starting my MAC treatment. Side effects from both the infusions and the MAC treatments have sure been on my mind. Learning from others has been a huge help, especially what they're experiencing and how they deal with it. I sure do appreciate your response and your advice. God bless you.