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Newbie MAC caregiver with questions

MAC & Bronchiectasis | Last Active: Jul 23 8:34am | Replies (29)
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@extracare808

Hi Melissa,
I'm an NJH patient and, per guidelines, the treatment protocol requires 12 months of continuous treatment post initial negative sputum test. Best case, this would mean that a patient who converts to negative after one month of treatment would have to continue for another 12 months (with consistent monthly negative sputums), resulting in a total of 13 months of continuous treatment. With respect to Arikayce, typically, this is recommended in refractory NTM cases, meaning cases where the patient is not converting to negative after 6 months of treatment.

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Replies to "Hi Melissa, I'm an NJH patient and, per guidelines, the treatment protocol requires 12 months of..."
Melissa Nelson | @melissa08 | Jun 22, 2022

Hi,
Yes we are aware of the 12-18 months of continuous treatment, or in my husband's case possibly/probably longer.
So far Bruce has had multiple consecutive negative cultures with a positive showing up in the middle. He is not considered to be on a successful track yet, after 10 months of treatment.
Following a sensitivity analysis on the positive culture his ID/Pulmonologist believes he has two strains of MAC or mixed MAC, since the recent drug susceptibilities differed in part from his initial MAC drug analysis.
His MAC is cavitary. He also has Bronchiectasis, in addition to radiation caused Esophagitis and a saber sheath Trachea.
Amikacin was switched out for inhaled Arikayce liposome after Bruce developed serious hearing loss.
My husband has a lot going on in his lungs so, as his caregiver, I welcome any comments, insight, suggestions, and war stories.
Thanks much.

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