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MAC & Bronchiectasis | Last Active: Nov 9 8:35am | Replies (74)Comment receiving replies
Replies to "I was just diagnosed with MAC by a pulmonologist who said to just watch it for..."
The big 3 was well tolerated by me (28 + 12 months). It was the Amikacin IV and Arikayce that kicked my butt.
It would seem to me that listening to your current Pulmonologist might be better than letting an MD try to treat your MAC. I remember my Pulmonologist saying (for example) that if you take Azithromycin alone it can make your MAC worse. You could get a second opinion but meanwhile (if it were me) I would not take anything without consulting with a specialist (Pulmonologist who is knowledgeable about MAC and Bronchiectasis etc). And ask your current Pulmo about starting airway clearance.
Everyone has their own way by dealing with this disease. I was diagnosed in August of 2021. I have no symptoms however I walk 5 miles every morning and do my vest airway clearance twice a day. I plan to keep this up because I would refuse the treatment. According to my ID doctor it never goes away even if you take the medicine. You can be in remission but it comes back. I am afraid of every side effect of all three antibiotics. He has also told me he has quite a few women with this who have lived with it 20+ years without taking the medicine. He has told me and I have read nothing good about it. With my age of 72 he feels I am doing the right thing. It all depends I think if you’re willing to chance taking the medicine. Life is a gamble for sure. Do what you feel best after discussing it with your doctor and I wish you the best.
Hello and welcome to Mayo Connect. As you read our various posts, keep in mind that both MAC and bronchiectasis vary greatly in severity from one person to another.
"Watch and wait" is one common strategy with low-grade MAC infections, but it is usually combined with airway clearance to help lungs fight it off. Most MAC bacteria are very slow growing, so unlike most infections, the risk in is small.
Can you tell us a little about your symptoms, and what led to the diagnosis?
Sue