MAC Medication Side Effects

@scoop @cherylbug
Yes, I am in Perth, Western Australia.

Narelle

I was diagnosed with MAC September 2025, started treatment December. First mouth, I was on Amikacin 750 mg IV every other day,Clarithromycin 500 mg 2x a day, Rifabutin 300 1 x a day, first two weeks, my stomach terribly hurts, MD stopped Clarithromycin for 1 week, feels a little better. I am on second month treatment: Rifabutin 300 mg 3 x a week, Azithromycin 500 mg 3 x a week, my sputum production has returned, I complained to MD, he ordered sputum test, but I have terrible dry mouth due to those medications, I am trying to collect sputum. Also my stomach still hurts, though it felt better than first month.

I am quite happy to find this supporting group, I am looking for suggestions as for how to deal with stomach issues from those medications? how do I know if I am on the right track for the treatment? how to find enthusiastic infectious disease doctor?

Some people do have mild side effects from Mac meds. If it gets to bad I would suggest spending with your doctor. So far I have had bad reactions to everything they have given me. Hopefully they can find something soon for me.

@ahs389 What I found helpful while on the antibiotics was - frequent small meals so my stomach was never empty, ginger tea and ginger chews for nausea, and a good probiotic to help replenish the gut bacteria being destroyed by the long-term medications.

@narelled23 I'm in NSW. How are you dealing with the Meds? Many side effects?

@cherylbug

I don't have an active MAC diagnosis thankfully and am not on meds for MAC. 🙏

@sueinmn : Thank you so much for the tips, I will give it a try.

@ahs389 agree with all the tips Sue provided. Definitely make sure you are taking a good quality probiotic. Do make sure to space out the antibiotics from the probiotics, ie take them about 2 hours apart. I was also told I could take my meds with or without food and found having something in my stomach helped so would plan on a small snack if not taken at mealtime. I also used sea bands or similar wrist bands to help with any nausea along with ginger.

@rmoore901 what is a good quality probiotic??any suggestions??
I am starting Monday with the big 3 everyday + Vancomycin everyday as well
….then I.V with a PICC line 3 X a week for Amikacin ….all this for 3 weeks before lung surgery and then after 🤪

@visions63 - wow. Big 3, plus another med, picc line and surgery, that’s a lot to deal with but knocking it out is important.

This is what my dr recommended: Fortify 50 billion CFU per day; or "Physician Choice" 60 billion CFU per day; or "Wholesome Wellness" 100 billion CFU per day; or Garden of Life Raw Probiotic 100 billion CFU = 1 capsule once a day with lunch.

I went with the Physicians choice which I could by locally and worked well for me.

Best of luck with all you have going on and good vibes for negative cultures so you can start the countdown to going off the meds.