I was on the "big 3" for 18 months a number of years ago. While the treatment did not significantly abate my MAC, I did not think the drug regimen that difficult. I read that it is hard for others, but I'm not sure what the symptoms are that they are experiencing. Could someone fill me in?
I do admit that I was supposed to take 3 ethambutol at once, and I didn't know that, so I spaced them out throughout the day. My physician did not see that as a problem (but I think my new doctor does). I remember being tired from the drugs and quite crabby from them. I had dialarhoea as well. Other than that, I was fine. Because I have acid reflux (GERD), I also was on Nexium, and I sometimes felt that maybe the Nexium helped me tolerate the other medicine, but I have no scientific evidence. I also have bronchiectasis.
Today I am starting another year-long regimen with Ethambutol, Rifabutin (with Clofazimine and Amikacin to be added soon--a week or so). I have cavities in my lungs, but I do not cough up much sputum. I am scared of the Clofazimine and Amikacin. If anyone has experience with these, please let me know.
Best regards, and thanks to all of you for sharing,
Mokie
I took clofazamine for about a month, it was an alternative treatment because I could not tolerate azithromycin which had caused hearing loss.
Clofazaminr caused me to become seriously constipated, and I had to go to an urgent care center because I had developed significant intestinal blockage.
I am no longer on clofazamine . . If you take clofazamine, perhaps you should take steps to prevent constipation before it develops .