New to Mac

Schedule is important. What worked best for me was Ethambutol with breakfast, rifampin at 9am, azithromycin with BIG dinner, and the other rifampin at 9pm.
Good luck -Rick

Thank you for your reply. I have some new strain with very little information on it. I have a pulmonologist, got an Infectious disease doctor who put me on Clarithromycin,Ethambutol and Rifabutin. He didn’t offer any information. That’s why I’m trying to learn on my own.

I am also fairly new to MAC and am taking Azithromycin, Ethambutol, and Rifampin. I take all but the Rifampin with food and still have GI issues. I have diverticulosis and had a significant episode of diverticulitis in 2022. A month after I began the big 3 drugs I experienced another bout of diverticulitis. My ID doc took me off the drugs while I took Augmentin for the diverticulitis but I have to start again. I haven't seen anything linking MAC treatment drugs to diverticulitis but the timing is concerning. I checked with my GI doctor who said I should try Culturelle, although I already take probiotics so that advice is not particularly helpful. I would welcome any suggestions or links to more information about the GI effects of taking MAC drugs. Thanks.

I'm about to start the big 3 drugs. I've not been very good at remembering to take medications in the past, even just once a day. Do you have any suggestions for remembering to take them?

Hi Ginny -
A few ideas come to mind.
First, if you have a watch with an alarm, set it for each med time. Very helpful if you can set a repeating alarm. My watch won't do it, so I used to set my Google Calendar with an alarm at the correct time, and was able to set up repeats for Monday, Wednesday & Friday. It would ring on my computer, phone & tablet - too annoying to ignore!
For daily meds, I put my AM pills right next to my coffee cup, and take them before coffee (I have no "littles" in the house in early AM) For evening meds, they are by my toothbrush.
From there, it is a matter of self-training - put up notes at first if you need to.
What does everyone else do?
Sue

I have an Apple Watch my son gave me in case I fall or pass out. The watch has several alarms and I can choose specific days so I am reminded when it’s pill time. I also have a pill box with 4 compartments that I leave on my kitchen table to make sure I don’t forget.

I put all my daily meds in a small dish in plain sight on the kitchen counter. It had to be empty at day’s end.

Also, to those who have not yet started the three drug treatment, I’ve previously posted about the MAC2v3 trial. You are randomized into either taking the three drugs or the two drugs without rafampin. You know from the beginning which group you are in. This trial has been ongoing for years and they now have about 430 participants and are hoping for at least another 30. Mayo is a test site. Also, your doctor can coordinate everything for you, and you do not have to go to a test site.

For more information they have a website and they’re always happy to answer your questions. MAC2v3study.org.

If you are having any EYE treatment/care, inform him that you are taking Ethambutol, as it can have some effects with some conditions.

Also, I was advised to NOT take it immediatly before or after meals.
Ralph

I’ve only been on medication for 6 wks. Still feeling sick and weak. The two doctors I have. An infectious disease and pulmonologist are good guys but they maybe over there head. Checking out teaching hospitals.

Steve