Newbie here. Scared and overwhelmed by MAC treatment plan

This is so helpful! Thank you.

@irenea8, this is a question that researchers are studying, called pharmacogenomics — also known as pharmacogenetics or PGx. Pharmacogenomic testing uses your genetics to help predict the way you will react to a drug.

What is pharmacogenomic testing and who is it for? https://mcpress.mayoclinic.org/living-well/what-is-pharmacogenomic-testing-and-who-is-it-for/

- Pharmacogenomics in patient care at Mayo Clinic https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/pharmacogenomics

Irene, were you aware of genetic testing related to one's ability to metabolize drugs?

Thanks Colleen, No I was not aware of such testing. I imagine they only do it at Mayo. or more advanced medical centers?

Hi. I also take the big three. I take them after I’ve eaten. Azithromycin by 8:30am after breakfast. Have a late morning probiotic yogurt snack (helps any nausea immediately). Then Rifampin after lunch at least four hours after the first med. late afternoon snack then dinner by 6:30pm and the ethambutol after dinner. My pharmacist recommended spacing the meds at least four hours apart. It works for me so far. I’ve only just begun so 🙏🏻

This is very similar to the schedule I used. 8 for Azithromycin with a light breakfast like toast. Noon for lunch and my probiotic, 3 for Rifuabutin along with crackers or a snack and 6 for ethambutol with dinner. Any other maintenance or short term meds (synthroid, Pepcid, cresemba etc were then spaced out around this schedule). I followed this daily as I wasn’t given the 3x per week option.

@ccarter1004 . I have not done the IV Amikacin. Just the inhaled Amikacin (called Arikayce). I have never been bedridden. At first, the Big 3 was a big adjustment, but after several weeks it got better. You may even do well with *no side effects! Everyone is different. I had some nausea but took half tablet phenergan or zofran & they helped. This is a lifestyle change for sure. I found it's ok to rest when I was tired. Keep researching, be knowledgeable about your meds, how to keep your environment & water with less MAC exposure. Rest when you feel you need it. Have a clean diet if possible. Be sure to get hearing tests (frequency per your doc) with the Amikacin & also Azithromycin. Both can affect hearing. After 14 months, knock on wood, my hearing is still good. I get monthly eye checks (ethambutol). Stay positive! Ask for help from family & friends if you need to!

Thank you for sharing your experience. These hopeful comments mean the world to me. With everything I am reading and hearing from others the thought of no side effects never even crossed my mind! The staying positive is so important and I understand how powerful that can be. But honestly, I am struggling with this.

Just know you’re not alone! And ask questions of your doctors and push them to answer you. Be your best advocate! Don’t stop doing what you want in life. Keep going! You got this!

@ccarter1004

@tte's advice was exactly what I would want to say to you. Yes, we are all different but there are those of us who have had mild to no side effects.
At 76, I was given the 3X P/W option for the Big 3.
I chose to take the meds in the evening before bed and no side effects. I had some fatigue during the day was all I can remember. Had my ears and eyes tested on a regular basis.
My problem with Arikayce was voice changes that got worse over time, and I wound up stopping the Arikayce earlier than the typical protocol. Good Luck

Hi, It's my first time commenting on here, and I wanted to share with you specifically. Dx in March 2025 with MAC and mild BE, 64 yrs young, and daily runner. Started on all Big 3 immediately and after 4 months, ID doc started Arikayce. With the exception of very slight fatigue on some days, I have had zero side effects from these four antibiotics. It took me 1 week to make med schedule fit my daily routine, not the other way around!!! After looking at other posts and realizing there's way more to be hopeful for than despair over, my initial fears of the unknown were mitigated. Though the daily regimen of meds/boiling water/airway clearance is a pain in the arse, I have chosen to not let MAC interfere with my schedule of enjoying my life in every aspect. Good luck to you in this new adventure. Terri