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@sueinmn

Hi Jennifer, I will repeat Irene's welcome to Mayo Connect. We are a community of people living with a great variety of conditions. We share our experiences and help each other along the way. We are not medical professionals, and do not give medical advice, but do talk about our challenges and successes.

I agree with Irene that it sounds unusual to begin treatment with Arikayce, can you please tell us about your symptoms, how you were diagnosed and what the doctor told you about this treatment?
Sue

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Replies to "Hi Jennifer, I will repeat Irene's welcome to Mayo Connect. We are a community of people..."

Hi Sue I was sick back in December 2019 and every X-ray and ct scan I took it showed fuzziness in my scans, inflamed so My pulmonologist put me on antiobiotics 3 rounds of it and predisone pills did repeat ct scans and they were showing nodule slightly larger still inflamed so they decided to do a lung biopsy so I did that dr recommend surgery to cut out nodule that was slightly larger I said no way Im Going to Manhattan to Sloan Because now I’m feeling pain so I did I went in To do this last August to see what was going on and for a second opinion thank god I did , dr told me let’s do a bronchoscopy so I did that and that’s when he said it was MAC I then followed up with another pulmonologist where I live Cause my first one I didn’t trust and My new pulmonologist he said take Arikayce so it’s been 3 days on it so far Praying I get better he says I need to be on this for 12-18 months I had training today for it to make sure I was doing it correctly when I clean unit and if I’m using nebulizer correctly. Write me back sue if you could thanks how are you feeling tell me about your experience as well I’m glad we can chat with each other I feel little better that we could do this . Thanks