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mch (Marycarol) avatar

Any success with saline only and no meds?

MAC & Bronchiectasis | Last Active: Aug 17, 2025 | Replies (37)

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Profile picture for cwal @cwal

I have not had to take the Big 3 (yet! fingers crossed). It is my understanding that after a certain amount of time, if you don't clear the MAC per sputum culture, they add another medication (per nebulization) to the regime. Are you seeing a Pulmonologist or Infectious Disease physician that specializes in treating MAC disease?

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Replies to "I have not had to take the Big 3 (yet! fingers crossed). It is my understanding..."

@mch I agree with @cwal, 2.5 years on the Big 3 when it isn’t working doesn’t sound right. The guidelines suggest adding Arikayce at 6 months if no culture conversion. Have you spoken to your doctor about Arikayce? There is also amikacin, IV or inhaled, as well as some other drugs we hear less about. The standard is to re-evaluate and change up treatment if no culture conversion at 6 months. I was at NJH recently and my doctor said that standard may soon shorten to 3 months as the data is showing that if one doesn’t convert on a drug protocol at 3 months, they are less likely to convert on that regimen and a change should be considered. Something to discuss with your doctor.

See ID/pulmonologist at Johns Hopkins. I use been on azithromycin and rigampin for 2 1/2 years. Couldn’t do ethambutol because of vision. Tried arikatce for over a year. In February, Dr. added clofaziminee, but said he considers it a lateral move and not likely to clear the infection.