MAC Treatment: Rifampin vs Clofazimine

I have not started my treatment yet for MAC Abscessus I am interested in information.

My spouse has refractory MAC after 8 months on Azithromycin and Ethambutol. His ID doctor gave him the choice to either start Arikayce daily or enroll in the phase 3 trial of inhaled Clofazimine. If he does the trial, he may get a placebo for the first 6 months. Then get the drug after that. We don't want his lungs to get worse over the next 6 months if he gets a placebo. He's also looking for a job, so we are concerned about the side effects from Arikayce, especially the voice effects which might be disadvantageous during interviews. His sputum last year did test as susceptible to amikacin. However it also tested susceptible to azithromycin, which has not cleared the mac. We don't know anything about the efficacy of inhaled Clofazimine. The doctor wants us to make a decision this week as to which drug to use. We would greatly appreciate any feedback or info. that might help us decide.

My spouse has refractory MAC after 8 months on Azithromycin and Ethambutol. His ID doctor gave him the choice to either start Arikayce daily or enroll in the phase 3 trial of inhaled Clofazimine. If he does the trial, he may get a placebo for the first 6 months. Then get the drug after that. We don't want his lungs to get worse over the next 6 months if he gets a placebo. He's also looking for a job, so we are concerned about the side effects from Arikayce, especially the voice effects which might be disadvantageous during interviews. His sputum last year did test as susceptible to amikacin. However it also tested susceptible to azithromycin, which has not cleared the mac. We don't know anything about the efficacy of inhaled Clofazimine. The doctor wants us to make a decision this week as to which drug to use. We would greatly appreciate any feedback or info. that might help us decide.

@carriebeth My ID doctor is starting me on Clofazimine oral. He gave me the option to go thru the phase 3 trial but did not recommend it because I would have to stop the Arikayce for 6 months prior to starting the trial. Also, he had another patient and said she had 1 treatment and then a delay before the next. Does your spouse have cavities? Are CTs showing worsening lung damage? If not, maybe he can go the 6 months (if it is a placebo). From what my doctor said and what I have read on this site, it seems most people tolerate the Clofazimine , although most do notice their skin gets dry and they look tanned.

@carriebeth My ID doctor is starting me on Clofazimine oral. He gave me the option to go thru the phase 3 trial but did not recommend it because I would have to stop the Arikayce for 6 months prior to starting the trial. Also, he had another patient and said she had 1 treatment and then a delay before the next. Does your spouse have cavities? Are CTs showing worsening lung damage? If not, maybe he can go the 6 months (if it is a placebo). From what my doctor said and what I have read on this site, it seems most people tolerate the Clofazimine , although most do notice their skin gets dry and they look tanned.

Yes. I will drop Rifampin but continue Azithromycin, Ethambutol & Arikayce and add Clofazimine. He is adding Clofazimine because after 16 months on the big 3 and 15 months on Arikayce, my cultures are still positive for Intracellulare and my CT's / Cavities are not improving. We did try Rifabutin in place of Rifampin and we tried adding Nuzyra but I was unable to tolerate either of those drugs. We are out of options, since I am not susceptible to any of the other drugs.