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Mycobacterium abscessus and ARIKAYCE

MAC & Bronchiectasis | Last Active: Dec 8 2:27pm | Replies (20)

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@swang18

I also have abscessus with erm41 gene, was MAC before. I was on everyday Arikayce for 10 months the culture became negative at last 2 months treatment, I stopped Arikayce for about 2 months due a big drop of PFT, my sputum turned to positive right after I stopped arikayce. now I am on 3x/week Arikayce for 3 months, still culture positive. I think 3x/week is not enough but I couldn’t tolerate it for everyday. The abscessus is very stubborn.

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Replies to "I also have abscessus with erm41 gene, was MAC before. I was on everyday Arikayce for..."

Were you on IV Arikayce and if so did you have trouble with hearing loss? I seem to hear that a lot. It seems many people are also on clofazimine?

Good morning - I wonder if you are treated for absessus is it because they showed in your sputum respiratory culture or because you had serious symptoms? I hope your treatment works for you and you can tolerate it this time. My best thoughts for you and stay strong from day to day.