Just started big 3 for MAC: Questions about dosing and more

Hi. I have bronchiectasis and MAC. I am on my second round event antibiotics. The first 13 months I took the three antibiotics only three days a week. After two months of being off the medication’s. The Mac came back. I am now on the medication‘s seven days a week, and the dosage is even higher. I don’t know if I should be taking azithromycin and ethembuterol together right after food and I am taking rifampin on an empty stomach a hour before I eat at noon . I’ve been given different schedules, but I want to know the very best and if I am doing the right thing.

I Have had migraines for about 15 years. I’ve been on about 7 different meds. Some worked temporarily, however Ajovy self injections once a month has worked for about 8 months. I still get headaches a few times a month but they don’t t last for more than 4 hours or so. Huge improvement!

I’m just starting on this 3x’s weekly regime. Do your pulmonologists generally advise starting by taking all pills at once & then spacing only if GI upset happens??
No one told me at my dr’s office what to do. Seems vague.
Glad to have a group to talk to. 😊

I just started the Big 3 a couple of weeks ago and found the following schedule works.

Ethambutol at night before bed. A side effect is tiredness so that works.
Rifampin first thing in the morning, on an empty stomach, which is required.
I wait an hour and eat - then take Azithromycin which can be taken with or without food.
When I first began taking, the GI symptoms were pronounced. So, I started taking Culturelle and that helped significantly.
Two hours after Azithromycin, antacids containing aluminum can be taken. Those can be taken until 4 hours prior to the Ethambutol. I used Mylanta as directed. It provided some relief.
I put all my dose information in my calendar so I know exactly when I can take antacids, etc.
I avoid PPI's as well as Imodium as that can lead to C Diff infection and I don't need that on top of MAC. However, my primary care said I can take Pepcid as that doesn't interact with the 3 and doesn't put at risk of C Diff. I used it Friday and it worked beautifully - no reflux at all the entire day.

I'm glad to have discovered a schedule that works and I schedule my vitamins around it so they don't interfere.

As to lack of guidance - I've run into the same problem and I'm changing out the doctors for those who communicate better. This illness is too serious (IMO) to deal with doctors who aren't available and communicative. My ID doctor didn't tell me about all of the interactions with my other meds and that lit me up so I'm replacing him. If on other meds, be sure to look at the interactions that especially Rifampin brings. It accelerates removal via the liver which can make other meds therapeutically ineffective.

Best of luck to you. It sucks, but I'm two weeks in and things are going well so far.

@colleen59 Welcome to Mayo Connect and the MAC & Bronchiectasis support group. Yours may be one of the most asked question in our group.

It is disturbing that doctors fail to counsel patients on a lengthy course of medications like this. We will try to help you be sharing our experiences, but are not medical professionals.

First, some people find it helpful to get medication counseling on this topic from their pharmacist, but rifampin and ethambutol are unfamiliar drugs to most of them, so they are generally reading directly from the patient insert.

One good way to start the drugs is one at a time, adding another each 2 weeks. That way if you have a severe reaction, you will know which medication is causing it. In that case, the order is usually azithromycin (or clarithromycin), then ethambutol and finally rifampin (or rifabutin).

We recently had a lengthy discussion of whether you need to avoid dairy on this regimen - the answer is No, none of them are affected by ingesting dairy, but calcium supplements or antacids should be taken several hours apart from the meds.

Another question is "with food or on an empty stomach?" Both azithromycin and ethambutol may be taken with food. Rifampin is slightly less effective when take with food, but if it causes gastric issues, it may be taken with a small snack (I took it with a few wafer cookies.)

What time of day? When it works for you. In my case, I had a lot of nausea & stomach pain, so my pulmonologist's nurse said to take them at bedtime - it worked - I slept through the worst side effects. I am listening to Dr Kasperbauer at National Jewish Health right now and she suggested this same schedule.

The drugs can all be taken together - you don't need to space out through the day or remember to take them on different days.

Azithromycin can cause hearing issues, so it is important to have a baseline hearing test before starting, and periodically (at least every 6 months) during treatment.

Ethambutol can affect vision, so it is important to have a baseline vision test before starting, and periodically (at least every 6 months) during treatment.

If you notice changes in hearing or vision, STOP the drugs and call your doctor. It is safe to do this - the infection is VERY slow growing, so a pause in treatment is not dangerous.

Rifampin can interact with many commonly used drugs, so if you are on other medications, go over the list carefully with your pharmacist. If you take multiple drugs that interact with it, the doctor may be able to give you something different, or work with your other providers to change your meds.

Your doctor should arrange for periodic sputum samples (every 1-2 months) during treatment to know when you "convert" to negative for NTM/MAC.

Periodic blood tests (monthly recommended) are required to monitor for rare side effects of the medication (they can affect blood, liver and kidneys in some people.)

Phew! That's a long list - but you can do it! Just lean on those of us who have been through it.

If your doctor has not already suggested the monitoring I listed, they may not be experienced at treating this infection - and you may need to find someone with more expertise.

Here is a link to an ongoing discussion on this subject:
https://connect.mayoclinic.org/discussion/mac-antibiotics/
How was your infection identified? What symptoms do you have?

@sueinmn Sue, what a great précis! The only thing I would add is that it's really important to keep up with nebulizing and airway clearance and perhaps add a daily Greek yogurt or probiotic if your stomach is upset. This is doable!