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Is there any successful story?

MAC & Bronchiectasis | Last Active: 14 hours ago | Replies (53)

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@carolj68

I started testing negative for MAC in October, after only 20 Arikayce treatments which were added to rifampin, ethambutol, clofazimine and azithromycin daily. I am now on the 3x/week Arikayce tx because I lost my voice completely after 7 days of daily tx, despite pre-treating with glycerine and water, and post tx saline gargle and hot drink. I discontinued ethambutol in October because despite regular vision testing with no changes, I was sent for a visual evoked potential test which showed optic neuritis even before vision changes occurred. Ask your ophthalmologist if this test is available to you. Hopefully, the optic neuritis will reverse with the discontinuation of ethambutol. I have continued, fortunately, to test negative without the ethambutol and hope that this continues.

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Replies to "I started testing negative for MAC in October, after only 20 Arikayce treatments which were added..."

@carolj68 I am curious about your drug regimen: rifampin, ethambutol, clofazimine and azithromycin daily. I have been reading about clofazimine as a potential replacement for amikacin but in your case it seemed you needed the amikacin to convert. Can you speak to your use of clofazimine? Was it included with the initial Big 3 treatment in hopes of converting without Amikacin? I read a study just last night that replaced rifampin with clofazimine in harder to treat patients (cavitary, advanced disease) but your doctor seemed to add it to the Big 3, like they do with Amikacin. I am just learning about clofazimine and trying to get a better understanding of its use with MAC. I have cavitary disease and I understand that while some ID doctors are starting to drop rifampin (and there is study done but I don’t think results out yet on just two drugs for non-cavitary disease) with cavity disease a third drug is still felt necessary, raising the obvious next question of options for this third drug. Amikacin seems an obvious choice but its known toxity levels seem to preclude long term use for many. I recently read that there is a clinical trial underway studying clofazimine for treating MAC but I don’t have any details in terms of the when/how of its tested use. My understanding is that it’s being looked at as a less toxic alternative to amikacin. I think we could all get behind a less toxic option to amikacin.

Anyone that has experience with clofazimine I would be interested in hearing about it. How was it part of your drug protocol and what was your experience.

Thanks!