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

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Profile picture for Sue, Volunteer Mentor @sueinmn

@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?

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Replies to "@colleen59 Welcome to Mayo Connect and the MAC & Bronchiectasis support group. Yours may be one..."

@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!