"Abscessus is definitely a tough one. I've been struggling with it since at least 2007, when I was diagnosed with both CF and Abscessus at the same time.
Our stories definitely have some similarities. I've been on and off IVs for the last seven years, and have never been culture negative. I also am usually smear positive, and when I become smear negative, I don't stay that way for long. I've been on IVs four separate times - three times for about six months, and then my last stint was 20 months. I've taken IV Cefoxitin, Primaxin, and Amikacin. I've also taken oral Azithromycin, Linezolid, and Moxifloxacin, as well as inhaled Amikacin. In addition, I participated in the Arikace trial. I'm currently on an IV holiday, where I'm only taking Azithromycin and inhaled Amikacin....."
"If you haven't taken Arikace, I'd definitely ask your doctor about it. It's been approved for compassionate use, and though supplies are limited and not everyone is eligible, you may be able to take it and it may help you. I don't think I'm allowed to say much about my experience on the trial, other than I tolerated it well and very much look forward to when it is approved for broader use."