Discussions
Discussions
Clofazimine Antibiotic
Are you familiar with the drug Clofazimine? Clofazimine is used for the treatment of some strains of NTM infections. Common side effects include stomach upset in some individuals and gradual skin tanning. The skin discoloration will begin to fade once the medication is discontinued. A baseline EKG and periodic repeat testing should be done while on this medication. Clofazimine is not commercially available in the U.S. for NTM infections. Access is through Novartis‑sponsored expanded access programs or FDA‑authorized SPINDs, with strict eligibility, documentation, and manufacturer cooperation requirements. Your healthcare provider will get this approval process started for patients in need of this drug. Have you taken Clofazimine? If yes, do you want to share anything with the community about this drug?
Replies
Good afternoon. New member here. I was diagnosed with m. abscessus and bronchiectasis in Feb 2025. After 14 months on nuzyra and clarithromycin a CT scan showed I now had MAC. I was taken off the first drugs and put on rifabutin, ethambutol and azithromycin. After 12 months I had a bronchoscopy which now showed the m abscessus has returned and brought along a friend, pseudomonas aeruginosa. They discontinued the azithromycin and tried me on levofloxacin but I had to discontinue it after 14 days. I just started round 3 with Arikayce Aug 24, Nuzyra Aug 27 & clofazimine today. I think the pulmonologist and ID doctors want to run another CT scan and bronchoscope in 4 or 5 months.
I will let you know how the clofazimine goes.
Comments
Welcome, Tom K. We're glad you've joined us!
Thank you, Vinny.
Welcome, Tom K. It sounds like you have a good team working for you!!
Thank you, Lucinda. The ID doctor recommended by the pulmonologist is young and very smart plus she does not mind going toe to toe with the insurance company. Yes, they are a great team.
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with Bronchiectasis and NTM, please consult a physician before making changes to your own Bronchiectasis and NTM management plan.
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