Treatment for MAC

Yes. My dr saw no red flags that would warrant Big 3 consideration.

Oh Yes. 40 months worth. Even with severe symptoms, it took a while to to get the MAC diagnosis (bronchoscopy, lung biopsy, even a failed recsection) and start the big 3 along with Amikacin iv and later arikayce.
- Rick

I'm in the same situation. I was diagnosed with MAC last September and my pulmonologist does not want to put me on antibiotics. I have very few symptoms, just a mild cough. I nebulize with 7% saline twice daily and just started taking NAC 600 my once daily. I work exercise 6 days per week. I am waiting for an appointment at Mayo and NJH for a second opinion. Have my next CT scan in a month so we will see.
How much NAC does one need to take to help with MAC? Also read that taking it on an empty stomach increases bioavailability.

Stanford where one of my pulmonologists is told me about a 2 drug study. I talked to my local pulmonologist who said I’d be doing that study for months not knowing and then have to do the 3. I decided to not do the 2 drug

I was diagnosed with MAC in June 2023 but did not start the MAC meds (3) until December 2023. Although scared to death by what I had researched about the meds, I have had no side effects. My cough is also gone--so very nice! Good luck.

Hi, glad to hear that. I have not started the meds yet, doing a watch and wait. What 3 meds did he/she put you on? Glad you had no side effects. Thank you! Barbara

Same thing with me--asymptomatic except a cough but ct showed progression since June 2023 and Dr. strongly advised starting the MAC meds. Cough is gone, no apparent side effects. Sharon

I was on the Big 3 due to my immune compromised state due to cancer treatment. I thought my eyeglasses were dirty until I suddenly could not read the Netflix descriptions on the tv. I immediately stopped the meds .One group of doctors said they didn’t see any problems so I went to another group and was told that my optic nerve was not smoothe as it should be.They wanted me to go to the hospital immediately and get I’ve steroids. I chose time instead ,as I read that the only difference would be the amount of time it would take for your eyes to heal as much as they would either way. I experienced color blindness,cloudy sight,could not drive for 5 months. I now am driving ,different light can have an effect on my sight ,glasses are definitely needed for reading. But I am ok ,I can function with the sight that returned. My last scan showed that MAC has increased and I have no symptoms….I have so many questions and to top this all off I am an organic farmer,small farm but always in the dirt.

Since you are intolerant to that MAC med, and I am so very sorry about that eye complication, see if you can get inhaled Arikayce. Your MAC is coming from the dirt. You have apparently the genetic makeup to get MAC. You should (no matter how hard it may be), wear an N95 mask. Your MAC will unfortunately keep increasing which will ultimately cause serious respiratory disease. Arikayce will kill the MAC , but you will have to continue to avoid getting it again- hence the N95’s. If you don’t care then don’t worry about it. You may be a lucky one and just die with MAC but not from MAC. Clearly I have no crystal ball, but your wonderful annd noble occupation of farming ( which I have a huge amount of respect for) is where you got MAC. That was the first question asked of me years ago- Did I live or work on a farm or have contact with birds? If you do nothing medically at all at least start wearing a mask. Irene5

Hi what are side effects of Arikayce? I wear a mask when I am tilling the dirt or dusty conditions,the Dr said to wet it down when possible. I am one of those that have no symptoms.I do not have enough “ stuff” for a culture.So frustrating