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Discontinuing MAC antibiotics

MAC & Bronchiectasis | Last Active: Nov 27, 2023 | Replies (73)

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@helenrivera

Thank you Sue for responding and yes very rough. I so believe my doctors don't understand how bad these make some of us feel. I had a sputum culture done 2x and waiting on result s which can take up to 6weeks. I am praying there negative. I have asked for a break or too go 3× week and my ID doctor discouraged as my cavity was too large and all over the place. I am trying to wait for the 2 different sputums as her pointed out I have only been on the meds 2 months. I expressed since starting I am way worse now than before starting. I started looking up appts at mayo but everything is so far not sure what other lung centers out there and can you please suggest ideas on how to change the way I take the 3 meds and Ariykace as everything I have read is when they 1st started meds, what about 2 months in? I currently take them in the morning and the rifampin and Ariykace in the evening before bed. Should I try taking all at night? Any suggestions will be appreciated. Thank you.

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Replies to "Thank you Sue for responding and yes very rough. I so believe my doctors don't understand..."

I gave 3 sputum samples and waited for a month to find that one sample came back with MAI. My pulmonologist started me on the antibiotic blitz well before we submitted the samples. Lucky.

I take all 3 meds in the evening with one saltine cracker. I have been on the daily regimen, plus Arikayce, for over a month, with little to no side effects. My doctor recommended taking them in the evening to 'sleep off' any side effects that may occur.