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Non treatment of MAC

MAC & Bronchiectasis | Last Active: Nov 5, 2023 | Replies (40)

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@sueinmn

You didn't miss anything - that is the preferred protocol.

But in my case, clarithromycin was the best choice for my strain of MAC, but I couldn't tolerate it and had to change to azithromycin (bad news since my long time tinnitus got worse.) And at my regular eye check (every 3 months) my ophthalmologist told me I was one of the few patients on ethambutol where she didn't have to ask for their docs to stop it early due to vision changes.

Just recently, inhaled Arikayce has become an accepted part of the protocol, and can be used when some other drugs are not tolerated. And 7% saline along with airway clearance has changed the treatment path dramatically for many of us.

So yes, in the ideal world we all tolerate the Big 3, but in the ideal world we wouldn't get MAC either, would we? So each person's treatment must fit them personally.

Sue
Typed as I sit here "smokin' my pipe"

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Replies to "You didn't miss anything - that is the preferred protocol. But in my case, clarithromycin was..."

Sue, MAC is a new and additional problem for me. I was referred to an ID following a positive culture. Arikayce inhalant was prescribed. I'm retired military. and a senior; prescription is one of my benefits which I get thru express scripts which is the agent that handles it. The arikayce required preapproval from the military. due to the cost which is listed in the thousands per month and a $68 copayment from me. They stated I must use conventional treatment for 6 months and still show a positive culture before they will approve it. Your comment on arikayce is very casual, was it a problem acquiring it for you? A few days ago, I signed an authorization for my ID to appeal their decision.