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@irene5

@jr2366 welcome to this knowledgeable and caring group. I am sorry you were diagnosed with MAC but glad you found Mayo Connect. I don’t know much, but I know Arikayce is taken after other treatments didn’t work or the patient was unable to tolerate the Big 3 as the medications are called. Arikayce requires training with a nurse and is very expensive. I have never heard of someone being “ put” on Arikayce. It’s a big deal! I had to fill out paperwork with my ID doctor and be ok’d by the company for the trial. And then I had to be be trained virtually by a nurse on how to use it. You said your doctor “put” you on it. Are you seeing an ID doctor? I read your posting like four times to make sure I read it correctly. When I was first diagnosed with MAC I went to a pulmonologist and then an infectious disease doctor. I am perplexed. Do you have symptoms? Again- welcome. You will find lots of answers here. irene5

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Replies to "@jr2366 welcome to this knowledgeable and caring group. I am sorry you were diagnosed with MAC..."

Hi Irene so I saw a pulmonologist since last December I was sick with pneumonia I then took several rounds of Antiobiotics predisone and several xrays Cat scans pet scans lung biopsy and even bronchoscopy at Sloan In August all in one year ugggh to see why my scans were coming back as something was inflamed inside lung and I had a nodule that’s was Little larger than 1st few scans . I’ve done it all they determined it is Mac, so I took all my scans to a pulmonologist where I live and he read my scans and paperwork and said I need to be on arikayce for 12-18 months so I’m on this for 3 days now I have a ways to go . I also have lung pain right side I told my dr that as well, he said yes that can happen Irene please get back to me thanks you’ve been helpful to me I feel alone in this but now I see there’s others. Thanks Irene