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Should I start clofazimine?
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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@legacygsh1
Thank you!
Good ideas - thank you!
@yardsend @reneemc. You both mentioned cavities but not cultures. I assume you are both still testing positive for MAC? I have been on the big 3 and Arikayce for 2 years and started Clofazimine about 4 months ago. So far I have slight skin darkening but no other side effects. Clofazimine seems to be the easiest to tolerate of all MAC meds for most people. Cultures are still positive and I will be going for another CT in May so I am hoping there is improvement with cavities.
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1 ReactionI tried it for several months but had to stop due to severe fatigue. I've been on Azithromycin and Ethambutol for 4 years to treat mild MAC (no cavities just some tree and bud - little improvement seen in CTs each year). Have also been on Arikayce for 3 years but recently had to cut back to every other day, as Arikayce is causing fatigue the next day. I'm 60 yrs old and scheduled finally to go to NJH in June for 2nd opinion workup. Hopefully that will help make difference.
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1 Reaction@ranxi
Please let us know what you learn in Denver
@mjb24
We are all different, aren't we? My sputum tests have been negative for 6 months - it's the darned cavities that are pushing me towards clofazimine.
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1 Reaction@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.
@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.
@reneemc grrrrrrrrrrr.
@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.