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MAC & Bronchiectasis | Last Active: Apr 20 7:22am | Replies (24)
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Replies to "@mjb24 We are all different, aren't we? My sputum tests have been negative for 6 months..."
@yardsend That's great news that you have tested negative for 6 months 😊. Congratulations on that! I don't understand how Clofazimine would help shrink cavities, I guess I will have to do some more research.
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@yardsend I am in a similar boat. I have been on Big 3 and Arikayce since last June, but many issues with Arikayce so on and off, on and off, currently on every other day. In May we are doing another CT and will evaluate for whether to keep Arikayce at current frequency and/or add Clofazimine. I converted month one, but like you and others have a persistent cavity. So my team is also likewise evaluating for how to maximize treatment to see if we can get the cavity to close, acknowledging that many cavities don’t close with treatment. For me, I would really like to see if I can get this cavity to close, so I am open to ways to “boost” treatment and if that includes Clofazimine, ok. I have heard in several different presentations that Clofazimine is often better tolerated than the standard MAC regimens. Of course, we are all different. Wishing you the best with whatever path you choose. These are not easy choices.