Inhaled Amikacin and Clofazimine

I did the first three and felt the best I have felt since my diagnosis and I have heard clofazamine is easy to tolerate (with skin darkening/tanning) as the only noticeable side effect. I would give the regimen a try - you can always adjust the meds if needed.

@jerseygirl2 You might like to connect with @suzyqueue who talked about the regimen in this discussion:
https://connect.mayoclinic.org/discussion/should-i-take-big-3-inhaled-arikayce/?pg=1#comment-1081723

I was taking azithro, clofazimine , ethambutol oraly and was on was on Amikacin IV three times a week for 4 months. Had no major problems besides being tired, having tingling feet- but it would be on and off. With clofazimine I am still “tanned” that’s what people say but well after I started the meds my constant, constant horrible cough slowly decreased and finally almost stopped and I could dare be among people again. I was also terrified of starting meds but eventually decided to and only hope to live my life as it is. Stay in touch with people on this site and ask questions throughout your treatment. My best wishes

Thank you so much for responding. I immediately felt a sigh of relief just to know someone did some of my proposed regimen. Ques - did you take the meds every day and for how long?

I wondered if you were not worried about the studies that list irreversible hearing loss and tinnitus that often comes with the amikacin, along with hemoptysis and dysphonia? My voice is my livelihood (work with youth and teens, lots of counseling, lots of workshops, etc)

Thank you so much for responding to my post! It was a feeling of great relief and helpful with the fear that seems to be attacking me. I appreciate your advice to stay in touch with people on this site.

I think you are very brave, to have done all 4! May I ask how long you were on the other 3 meds if you were on Amikacin IV for 4 months? And what was the outcome? Success?

Wow! thank you, I will be looking that up today! Sure do appreciate your input and help!

I did lose my voice for the first two weeks, but it came back. I was careful to always rinse my mouth out after doing the inhaled amykacin and I would also do a tablespoon of honey after every treatment. I had my hearing checked regularly and had no problems.

Thank you very much!!!
It really does help to hear it and brings some relief. I appreciate you taking the time to respond to me.

Unfortunately, I worked myself up into a frenzy of fear and still feel anxious and scared. I’m trying to counter that fear which is why your response is so important to me.

I took azithromycin ethamutol and rifampin for two years didn’t work resistant to az now I am infusion amikaycin clofazamine Rifabutin and ethamutol. On it for six weeks so far. I was scared also but so far so good