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Cavitary MAC/MAI and choosing no drug treatment ?

MAC & Bronchiectasis | Last Active: Sep 14, 2023 | Replies (21)
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@dulwich

Hearing loss is much less common with inhaled amikacin compared to iv
I added Arikayce to standard treatment 2 years ago at 66
I had never had any MAC symptoms- like you, damage on CT and positive smears and cultures
I had a lot of coughing the first 1-2 months on Arikayce and my GERD was worse related to that , but then the side effects settled and my cultures converted to negative within 5 weeks and stayed that way ( fingers crossed)
In other words, Arikayce can be very effective and mostly tolerable after the first couple of months, so not something to be scared of
Good luck if you go ahead with it

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Replies to "Hearing loss is much less common with inhaled amikacin compared to iv I added Arikayce to..."
mokie | @mokie | Sep 12, 2023

This is incredibly helpful. I am more and more confident I should go ahead with Arikayce. I hope you saw the tip from another person on this site that sodium chloride can help with the coughing. They add some to the nebulizer. At least that worked for that person. My sister who is a nurse was familiar with the pharmacist at her hospital doing that for other nebulized meds.

Thank you!!!
Mokie

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