The big 3 antibiotics for MAC

My name is Betty and I was diagnosed with MAI and bronchiectasis in 2019. I never started treatment and felt great until the second half of last year. I started getting recurring pneumonia as and feel sick all of the time. I’m very fatigued, fell. Borderline fever, some shortness of breath and my pulmonologist did a bronchoscopy and CT scan which is showing the MAI is active. I will have to start the BIG 3 drugs and I’m terrified. I am very thin, and it seems like everything upsets my stomach. (Even taking one round of Doxycline). Can anyone talk about if your system gets used to these drugs after a few months and you feel better? Thanks so much, BettyArn

After wasting away before treatment, I gained 40 lbs while on the big 3. Only side effect was from daily azithromycin in the morning was some GI a couple of hours later. When switching the azithromycin to MWF with dinner, no problems. Take some probiotics.

I am 79 years old and diagnosed with MAC last March 2023. I was diagnosed with BE in 2021. I have two MAC subspecies, Fortuitum and Chimaera, the latter being the slow growing. I too have a low BMI and I find guidance with a dietician who can help me to possibly gain close to 15 pounds, the most difficult thing I've ever attempted.

I am taking Azrithromycin and Ethambutol only -- and no ACTs right now due to hemoptysis caused by Aerobika, saline, albuterol -- together and/or apart. I have an ID doctor at a major national hospital who is watching over this treatment. I know ACTs are very important but I need to treat the MAC for now and hope I don't have any other major infections in my future.

For those experiences gastro problems from the drugs: Since I was diagnosed last March, I have been taking a very strong probiotic daily. I take the 2 antibiotics first thing in the morning and the probiotic at noon and have had no gastro problems. Although it may not make a difference, I take a NativePath live probiotics 82 billion CFUs per 30 capsule container. A strong probiotic, no matter the name brand, is best for our conditions.

I hope this helps. Best wishes.

Thanks Rick. I’m glad to hear you gained weight. I have lost 20 pounds in the last year and am very thin. I was thinking taking the BIG 3 would make me lose more weight. Did you find yourself eating more with the pills to keep your digestive system calm? Also what is MWF? Not familiar. And, lastly how long were you on the treatment, and was it. Effective? Thanks so much, Betty

Monday, Wednesday, Friday.

Being terrified is a horrible feeling. I was a disaster before trying it all in 2016. I am not a big person and had lost 18% of my body weight by just “being.” I was petrified to start the meds but was told in no uncertain terms I had no choice. Give it a try and see. Wishing you peace of mind. Irene5

Thanks Irene for your encouragement. I am finding peace with this. I haven’t started the treatment yet, but feel sick almost everyday with fatigue, shortness of breath, etc. so I am ready to start the treatment. Also I keep losing weight. I still do not understand why we all lose weight when I am eating basically the same diet.

I was down to 104 when I started treatment and now I’m up to 127! I met with a nutritionist and she said to make sure I get protein and fiber, and eat often. The nutritionist told me when you have an infection it will take from your body so you need to eat healthier. As much as I don’t like the meds, I’m sure I gained weight by tackling the MAC.

Before treatment, the MAC had my CBC/CMP blood tests were over the place. Once this was controlled, my appetite came back and I ate everything I could, all day snacks, ice cream, pot roast, etc.

I too, cough up blood occasionally. The first time it happened is what made me go to my doc. I had no idea I had Bronchestasis. Of course, the first thing I thought of was lung cancer. I was terrified. Ironically, I was at a hospital visiting my dear brother in law who was dying from lung cancer.
Four years later, I am on the B3 and learning about the disease from this group and my pulmonary doc. I don’t panic at the blood any longer. It just happens sometimes. Mostly from little blood vessels that get irritated and break when coughing I think. I wouldn’t worry unless there is a lot of blood, not just a tablespoon or so. If you need peace of mind don’t hesitate to call your doc.