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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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I understand. Dealing with the normal difficulties and decisions of growing older plus a chronic disease is taxing to say the least. I think though, that you already answered yourself " I have lots to live for"
Best wishes for your health and your decision.
I’ve been on it for 4 months. Some GI issues for the first 2. But that’s better now. It doesn’t seem to have caused any other issues yet. But I get my hearing and vision checked every two months.
I’ve been on Clofazimine since 9/24, No reduction in cavities
@westcottkm3040
Thanks for that encouraging info. The team here would also increase frequency of testing.
@reneemc
Oh, Renee, that must be discouraging. Are you on the big 3 also? My doc said they have seen a big range of responses in terms of cavity collapse. How long will you keep taking it? Have you had any measurable improvements?
@cwal
Thank you for the encouragement.
I wanted to make 2 comments. I am older (70-s at the time) highly med sensitive. Was on the Arikayce, Rifampin and Azithro --after 14 months cultures continued positive but reduced. Added Clofazamine and converted to negative immediately. I was concerned about side effects. I had a mild rash for 5 days -- that was it!!! Yes a slight tan for the 15 months that I took it. Just my experience...it was a very easy drug on my system
Barb
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3 ReactionsThank you Barb!
I resisted taking clofazamine due to the side effects. I’ve got a very large cavity, and after being on ethambutol, azithromycin, and inhaled Amikacin for almost a year my doctor encouraged me to take the clofazamine. I just started a week ago and so far am doing well. I’m hoping it will help. What helped me decide was reading from this group and realizing others had the same fears and knowing I’m not alone in this journey.
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1 ReactionI would at least try it and just watch for the side effects. Maybe do weekly vision checks in your home. I would think you could google and find vision checks online. Also, go in to the eye doctor more frequently. That way, if your vision starts to decline, stop taking. As for GI, I don't think Clofazamine is as bad as some of the others. Good luck!
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