Clofazimine for MAC: Anyone have experience with this drug?

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.

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.

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

Anyone using Clofazamine?
I had to stop azithromycin because it caused Hearing loss
Ophthalmologist warned against ethambutol because I have glaucoma Have an appointment at Mayo on May 24.
Having problems with the big three combination

I also had to stop azithromycin about 6 months into my first round of treatment for MAC (in 2000). They substituted ciprofloxacin. The MAC came back within a year. I went to NJH and they decided to try clarithromycin. I was on that along with ethambutol and rifampin 3 times a week for 10 months, then daily for the last 4 months and have had no change in my hearing tests.

I meant to say I had to stop the azithromycin due to hearing loss.

Hi @angeles31, I moved your question about Clofazamine to this discussion on the same topic:
- Clofazimine for MAC: Anyone have experience with this drug?: https://connect.mayoclinic.org/discussion/clofazimine/

I did this so you can read previous helpful posts and connect easily with members like @marthamac @bnthorson @dulwich @jenblalock @hydrang3a @nac1 @marlin and @sueinmn

I took Clofazimine and did not have any issues. I felt my hearing was not as good but testing did not show that.

I’m glad to hear you had no issues
No change in skin color ? How long did you take it and what other antibiotics did you also take ?
I am 90 years old . Running out of time . Thanks for your response .
It’s very hrlpful .

Thank you so much. What is NJH?
I was told ethambutol could affect
my vision; I already have vision loss from glaucoma .
I’m happy that you have not experienced hearing loss.
Best of luck