Should I start clofazimine?

Posted by yardsend @yardsend, Apr 17 9:31pm

Dear BE Buddies,
I am facing the tough decision – to take an antibiotic or not? This is my situation: I have “mild” BE with MAC, two cavities. Last June I was started on the big 3 plus Aricayce. In October I developed ototoxicity, which manifested as severe balance problems and some hearing loss, and was taken off Aricayce. Continued the big 3, at higher dose (daily 600 mg azithromycin, 1000 mg ethambutol, 450 mg rifampin). I declined adding clofazimine at the time. Was prescribed a Volara, use it 2x daily with 7% saline. My balance has improved with PT, but I’m still wobbly.
Six months on, a new CT and PFT show slight improvement overall, but cavities are still there, the same size but thinner walled. The pulmonary team, whom I think very highly of, is again encouraging me to take clofazimine. I’m on the fence, because of fear of side effects. I don’t mind if my skin gets darker, but I’m afraid of the less common side effects, especially damage to my vision. And stress on my digestive system.
So, it appears that I am making very slow progress with only the big three, and it could be years before the cavities are gone. That time would be much reduced if I take clofazimine – IF I am able to tolerate it. I was miserable on Aricayce – the usual voice changes, nothing tasted good, lots of heavy sputum, exhaustion, weight loss. I’ve felt better and better in the six month since I stopped it.
I’m 77, in generally good health, have a beautiful new granddaughter, a lovely community in the redwoods, lots to live for. It looks as if I should take the chance on the clofazimine – but I sure would like your ideas.
Thank you, Sarah

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Profile picture for notnancy88 @notnancy88

@barbarita I agree about the clofazamine. I have very little if any reaction to it except for the light tan. I didn’t know it was supposed to reduce cavity size.

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@notnancy88 @yardsend So Clofazimine has been shown to close cavities, this is good news. https://pubmed.ncbi.nlm.nih.gov/25605283/ MAC likes to hide out in those darn cavities and the medication can't get to it so reducing or obliterating them would be great for any of us struggling with getting to a negative culture.

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Profile picture for bayarea58 @bayarea58

@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.

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@bayarea58
Please let us know what the May CT reveals!

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I have been on clofazimine for quite a while (over a year), and have had no adverse effects from it.

Along with the clofazimine, I have also been on ethambutol, rifabutin, and azithromycin at the same time. They had me on arikayce for a year. My hearing is a little affected by that. I was taken off as I got resistant to it, but I'm back on it now. Doctors are sometimes guessing with the meds.

Kind regrds,
Mokie

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I forgot to say: while the clofazimine did not knock out the MAC, there was some improvement, and the results for clofazimine clinically are positive, from what I've read and heard.

Mokie

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