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Insmed Incorporated Message Board

  • checksurshorts checksurshorts Apr 5, 2014 12:12 PM Flag

    CF Patient with NTM (since it was removed)

    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.
    My doctors weren't big fans of me going on this holiday, but I begged for it, as I needed a mental break. I'm smear negative right now, but as soon as I go positive, I anticipate the break being over. I was recently approved to take Clofazimine, so as soon as I start to slip a bit, I'll start that and likely start IVs again as well.

    After spending a few weeks in the hospital when I was first diagnosed, I've thankfully managed to avoid it since then. I've had to go on disability twice, but for the most part have managed to work full-time as well as live an active life. For me, the most helpful things seem to be aggressive airway clearance as well as exercising almost daily. My workouts consist of pretty intense cardio as well as weight training. In some ways, I think these two things have been more important for me than the antibiotics (though they are of course very necessary), so my biggest piece of advice would be to figure out how to begin working out (if you don't already). Regarding my doctors, National Jewish guided my care for a few years, and then I switched over to NIH and Dr. Olivier (closer geographically)....

    Sentiment: Strong Buy

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    • Yahoo not letting me post the rest.

      Sentiment: Strong Buy

    • Note: "I unfortunately can't tolerate IV amikacin"

      "Sorry for my delayed reply. My shortest stint on IVs was three months, and in hindsight I shouldn't have gotten off so soon. I've also been on them for six months a couple times, and once for almost two years. I unfortunately can't tolerate IV amikacin - we tried that initially, but I had severe neurological side effects and had to get off it very quickly. The inhaled version also unfortunately affects my hearing, but I take it anyway because I don't really have a choice. It works pretty well for me, and I'd rather be thriving with some hearing loss than the alternative. I've also taken cefoxitin, but that doesn't seem to work very well for me. For now, primaxin is my go-to. My last long regimen (20+ months) was oral azithromycin, IV primaxin, and inhaled amikacin. During that time, I also participated in the ARIKACE trial."

      Sentiment: Strong Buy

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