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Starting Arikayce - nervous

MAC & Bronchiectasis | Last Active: Jan 22, 2020 | Replies (85)

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@beatitnow

@angiejohnson…1). So, do you expect to be on Arikayce your whole life? I am 48. I've been on big 3 for a little over 2.5 years. I am hoping Arikayce is going to help me get rid of this. 2). Are you still taking the other two regimens from the Big 3 besides Rifampin? Thank you for your help.

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Replies to "@angiejohnson...1). So, do you expect to be on Arikayce your whole life? I am 48. I've..."

@beatitnow No I will stop treatment in November. I take Arikayce with Ethambutol and Azithromycin- all 3 times per week. In two months after starting Arikayce I showed significant improvement. That was my March chest CT. Then I had a right middle lobectomy in April. My June CT showed new infiltrates. So they think I keep reinfecting myself. That is why I’m going to great lengths to eliminate NTM in my personal environment.

@beatitnow Hi there. Bear in mind that mac is rarely beaten permanently, especially if you have bronchiectasis. Drugs do not cure bronchiectasis, or other circumstances behind why we get mac. Chances are that you may need low dose maintenance antibiotics for many years to keep the mac away once it appears gone. This disease and infection is very complex; that is why drs tend to try diff ways to treat it, and honestly, most don't even really know how to treat it. I think that they have that 'throw enough mud on the wall something will stick' mindset. On the brighter side, meds have come a long ways and getting approved quicker. Education on this topic is becoming more universal. And research is amping up.