I went through this treatment here in UK (Manchester)
Amakacin (4 months)
Rifampin
Azithromicin
Clofazimine 200mg
The clofazimine turned me bright pink to point i looked ridiculous
The pink dye in the drug was coming out on my clothes/ bedding and my shower sponge was pink.
The recommended dose is 100mg . I think my consultant was using me as a Guinea pig. I started having blurry vision and developed foaming urine then started having numbness and sever muscle wasting.
After having an eye test, residue from the pink dye could be seen in the back of my eye .
I quit the treatment at 6 months. I had one negative sputum sample but toll it took on my body was too much.
If you’re going to try it I would go low and slow
My consultant was just negligent giving me way to much in my opinion.
My skin now is transparent/stretchy/itchy and wrinkled. My hands look like I’m 90 years old

Hi Marianne, wow you are great to be able to tolerate 5 antibiotics for your MAC. I was on 3 for 14 months and was only clear for a year and the MAC returned. I found the treatment tough going and my kidneys were damaged by rifanpacin. I did not research the whole thing enough. When I mentioned feeling ill, itchy etc I was told that it was unusual. I am not keen to go back on any antibiotics as they wrecked my gut. I was not told how I could avoid the various side effects plus I lost a lot of weight. I wish you all the best and hope you get through this. This site is great as you can compare notes with others and it gives your peace of mind. I do a lot of airway clearance and I exercise. I feel ok despite having NTM and bronchiectasis. I get very tired but have learned to pace myself.

@gemini1956 we all understand. All these drugs are concerning and we each do our best to weigh their pros and cons. The internet is a marvelous tool, I don’t know where I would be as a patient without it, but it can take a lot of time and the right questions to really get a complete picture, and even then most of us don’t have the medical training or experience to fully put all the information in context for our specific circumstances. I am not on Clofazimine, but had questions about its use with NTM patients. I asked a pharmacist in my local system about it and why it is so difficult to get and use (here in US) and she explained that it had a lot of problems when used years ago in the HIV community, leading to the restrictions, but she said her research showed that those same problems do not seem to come into play with immune-competent NTM patients. I attended a conference here in the US in May and one of the well regarded NTM specialist physicians spoke about the importance of improving access to clofazimine for NTM patients. I believe currently only the universities here in the US can access through a special program. But NJH, arguably the leading NTM medical facility in the US, does use clofazimine when they feel it’s appropriate. I suspect all of the university based NTM centers here do. All to say, be careful about incomplete bits of information, they don’t give the full story. Of course, I am not saying clofazimine doesn’t have risks, all these antibiotics do, but we want to do our best to make our decisions based on the best and most complete information available. While the internet may give us an informed start, our doctors, pharmacists and other members of our medical team are best positioned to help us in this decision making. Good luck.