Medications for MAC

I was on the same treatment plan in 2009 for 18 months for MAI (they tell me it is the same as MAC). Everyone responds differently to the meds; some people don’t have any side effects. It was rough for me, stomach cramps, nausea, diarrhea. You will need to find foods that you can tolerate while on the meds. For me it was boiled eggs, yogurt, soup, saltine crackers, ginger ale, ginger tea, ginger hard candy & probiotics. The meds made me very tired, I didn’t accomplish a lot on the days I took the meds. I was fortunate to be able to take early retirement at age 59, otherwise I would not have been able to complete the treatment. Wishing you the best & remember you may do fine on the meds.

I had Bronchiectasis since2017, after I had a cold and prolonged coughing. At end of last year I found a tiny bit of blood in my sputum. I went to Augusta University health center looking for help. When I tried to make an appointment with any pulmonologist (I was new to this area),The staff who was making appointments was very helpful, she spent time to find Dr Gonzales who is specializing in Bronchiectasis. First appointment doctor ordered CT scan.lung function,a few days later doctor called me my preliminary lab report found AFB. I could join the clinic study group for Arikayce but I chose to start the big 3 antibiotics treatment.Dr Gonzales let me start clarithromycin first,1 week after adding rifampin, and another week later added ethambutol. I took rifampin and ethambutol together at morning empty stomach with a glass of water,1 hour later I take Arithromicin with breakfast.Thank god I tolerated well.To avoid intestinal bacteria imbalance I took yogurt,kefir almost every afternoon. I heard that fermented food is better than probiotics.
So far I am doing fine with 3 antibiotics.Until 9 weeks ago I started Arikayce treatment, specially after 4 weeks Arikayce,I lost appetite and severe fatigue,cough terribly.which lasted about three weeks.recently I felt getting better little by little. I feel much stronger than a month ago,able to walk,eat and coughing much less.Recent 2days my sputum reduced a lot.with only levalbuterol and 7% saline inhaler wouldn’t produce much sputum. I don’t know this is good or bad. Don’t know if anyone has same experience like this.

I’ve been taking these meds daily for two years. My culture was negative in Jan 2023 so I can stop meds in Jan 2024 (protocol for me is one year after converting from MAC positive to negative. Taking a high quality probiotic and taking the antibiotics religiously everyday at same time as directed has helped. I have manages all side effects. Your body will get used to the meds. It takes a few months. Good luck

I stared two weeks ago. I add on Rifampin this week. I have upset stomach, headache and some dizziness. I take them with food, by dividing them at breakfast, lunch and supper. Crackers and toast helps my stomach. So far it’s not as bad I thought it would be, I had so much anxiety about taking the antibiotics, but now I believe I will be okay. Prayers are helpful.

Dear Bbeers.
I was diagnosed with MAC October 2019. I was referred to I.D. Dr. Mayo clinic. I.D. started me on the BIG three for 18 months, Mo-We-and Fr. I did not have any problems during the 18 months, poor appetite (which was never great), my BMI dropped till # 20, but I was able to complete 18 months of treatment.
Sputum cultures were negative for MAC after 18 months of treatment.
12-14 months later MAC returned. No treatment at this time.
Now: Twice a day I Nebulize with 7% saline, Vesting and Airobika.
Both Mayo Pulmonologist and I.D. Drs recommended to HOLD another course of antimicrobials for NTM as long as I remain clinical stable and exacerbation-free.
I am 76 years old, in good health, except NTM and bronchiectasis. I wish you good luck with the treatment.
Stay Positive, Enjoy Life. Sending Peace 🙂

Thank you for your response. Did you take the meds every day or 3 times a week as my Dr. has prescribed. I'm wondering why my Dr. has not recommended a nebulizer or saline etc. seems like everyone on this site is using them. Glad you are doing better. My Dr. told me the reason I got this was as a result of having TB as a kid and having mild COPD.

Hi, thank you for responding. Were you taking a probiotic or prebiotic while taking the meds, I understand that that does help with the stomach issues? Your words are encouraging and I am a praying person. Take care and be well.

Yes I take the big three every day. Clarithromycin 500mg every 12 hours. Rifampin 3 capsules (450mg) and Ethambutol 2 tablets (800mg) take together at morning empty stomach with a big glass of water. Waiting for 1 hour I take clarithromycin. I have my nebulizer (levalbuterol,7%salin,2 times a day. I have my Arikayce inhaler once a day around same time.
I didn’t have any side effects from big threes. But Arikayce said effects happened in 4weeks after it was started. I felt very sick. I didn’t stop Arikayce treatment and the side effects gradually stopped. I regained my appetite,energy, and coughing much less. I received culture negative report 2 times (July,August) . Hope it continues to be negative in the future.God help us.