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’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 did 28 months then later 12 months. No major big 3 issues. Amikacin and Arikayce were brutal

So when did you take the last two that you said were brutal? Thank you for your reply to my initial question.

At the start amikacin iv, at 18 months I started arikayce. I did not do well, many folks do ok

@rsteil , could you please share how your illness responded to the Arikayce? It was not an easy treatment for you, but was it an effective one? Thank you.

5 weeks into Amikacin iv I had extreme dizziness, got sent to ER, Dr cut dosage some but dizziness continued for 7 more weeks. Once stopped it went away, thankfully. Arikayce was ok at first weeks with daily usage, after 4 weeks it was ear problems extreme cough, sore ribs, headaches. At 4 1/2 months I could not neb for more than 7-10 minutes and Dr then stopped treatment. Continued requests to Arikares, Insmed and Kroger went unanswered. Now the standard practice maybe nebbing 3 times per week. I may have tolerated hat regime, I'll never know. It does work for many folks.

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 🙂

Do you think the reason the MAC returned because it is in your water. My Infection Disease Doctor told me the most likely place I got infected with MAC was from a hot tub or shower. I don’t have a hot tub so it has to be the shower. I asked him would taking a bath be better he said no. I asked would using nose plugs and turning the hot water heater up work he said no. Does anyone know if any precautions to use to not get reinfected. I do nebulize half a vile of albuterol and a whole vile of 3.5 saline once a day. I also use the Aerobika and do the Huff cough but I don’t get any Sputum up.