Clofazimine for MAC: Anyone have experience with this drug?

Posted by bnthorson @bnthorson, Feb 27, 2021

I am going to be starting Clofazimine along with the big three as one strain of MAC I have is resistant to Azithromyacin. I am as wondering if anyone has had experience with this drug?

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

I was offered clofazimine by my ID doc. Has anyone here taken it and become culture negative after taking it? Also how bad is the skin discoloration after being on it for several months?
Thanks!

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@marlin

I was offered clofazimine by my ID doc. Has anyone here taken it and become culture negative after taking it? Also how bad is the skin discoloration after being on it for several months?
Thanks!

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@marlin great question, I will look forward to answers.

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@marlin

I was offered clofazimine by my ID doc. Has anyone here taken it and become culture negative after taking it? Also how bad is the skin discoloration after being on it for several months?
Thanks!

Jump to this post

Hi @marlin and @heathert, I moved your question about clofazimine to this discussion:
– Clofazimine for MAC: Anyone have experience with this drug? https://connect.mayoclinic.org/discussion/clofazimine/

I did this so you can connect with @bnthorson @dulwich @jenblalock @almap @sueinmn @nac1 who also have experience with this drug and may be able to share their experiences with having a negative culture after taking it and if they had skin discoloration after being on it for several months.

Marlin, have you started taking clofazimine? Are you taking other antibiotics too?

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@colleenyoung

Hi @marlin and @heathert, I moved your question about clofazimine to this discussion:
– Clofazimine for MAC: Anyone have experience with this drug? https://connect.mayoclinic.org/discussion/clofazimine/

I did this so you can connect with @bnthorson @dulwich @jenblalock @almap @sueinmn @nac1 who also have experience with this drug and may be able to share their experiences with having a negative culture after taking it and if they had skin discoloration after being on it for several months.

Marlin, have you started taking clofazimine? Are you taking other antibiotics too?

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@colleenyoung Thanks for that

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I’ve been on clofazamine since August. My skin became tan gradually. Reduced dose by half when I was noticeably a bit darker….like I’d been in the sun….in December….will continue until this August which NJH recommended….no other side effects…and because I’m on other drugs too I can’t attest to its specific contribution to fighting MAC and Absescessis….which thank God is so far I’m keeping at bay.

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Hello. Not sure where I should be posting this question but was wondering – has anyone heard or read or personally had success with fighting MAC with severe dietary changes alone? My sister was on the Big 3 – 18 months in she began losing vision so stopped cold turkey. She is now on a diet with NO gluten, sugar, dairy or meat. She is doing very well with her lung cavities shrinking. I, too, have MAC & want to avoid medication but her diet seems so radical hence seeking some feedback. I found nothing online in support of this. Any input appreciated. Take care.

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@lucie0948

Hello. Not sure where I should be posting this question but was wondering – has anyone heard or read or personally had success with fighting MAC with severe dietary changes alone? My sister was on the Big 3 – 18 months in she began losing vision so stopped cold turkey. She is now on a diet with NO gluten, sugar, dairy or meat. She is doing very well with her lung cavities shrinking. I, too, have MAC & want to avoid medication but her diet seems so radical hence seeking some feedback. I found nothing online in support of this. Any input appreciated. Take care.

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I would be skeptical of any extreme diet curing MAC or any other infection. Good nutrition can help your body fight infection, but adequate protein, vitamins and minerals are big parts of that requirement, and difficult to meet on a limited diet.
Is your sister using a nebulizer with medication or 7% saline, airway clearance or a percussion vest? If so, those may be the reasons for improvement, and not her strict dirt.
Sue

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