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Starting Arikayce - nervous

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

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@angiejohnson

@beatitnow I have gotten my voice back. I’ve been on Arikayce 9 months. I think effectiveness depends on underlying conditions and if you keep being reinfected. I went to National Jewish in CO in July. I found out I am a carrier for the genetic disorder Alpha 1 Antitrypsen. This causes your bronchial cilia to essentially be paralyzed, which makes it difficult to clear infections. I am anticipating having this until I die. I’m only 47, so doing daily airway clearance and boiling my drinking water and ordering a special shower filter, the only one proven to eliminate MAC. Happy to answer any questions you have!

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Replies to "@beatitnow I have gotten my voice back. I’ve been on Arikayce 9 months. I think effectiveness..."

Angiejohnson. What is the name of the shower filter that you use. Thanks

@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.