Mac question: Arikayce Inhaler Antibiotic

@janeta I could not communicate for a few weeks but for the rest of the time on Arikayce I could communicate verbally, just a little but raspy. Yes a lot of us will not be able to get rid of this completely, I go to dr next week because my 3 antibiotics do not seem to be doing a lot, so I may be on the same regime as you, will be interesting. What 4 are you on ,Meropenem IV, arikayce, clofazimine and 1 other. yes amikacin is the IV version and arikayce the inhaled. So sorry you have had awful side effects, not nice. Take care Heather

I'm currently taking IV Meropenem, Arikayce, Moxifloxacin (Avelox), Azithromycin. The Clofazamine may be started next month. I had no idea that I had anything wrong with my lungs until 2018... no idea that I had bronchiectasis or MAC (no cough!, but extreme fatigue that my PCP didn't pick up on for the couple years I mentioned it) .... I believe it could have been found many years prior .... and I wish it had. "It is what it is." *** As an additional note, I initially, in 2018 started with Rif, Eth, and Azithro, but 9 months in, had a "metabolic implosion" (MY words). A sudden severe reaction to the meds - sepsis, acidosis, hemolytic anemia, kidney failure, kidney dialysis, blood clots, atrial fib, internal bleed. 3 weeks in the hospital; 2 wks in ICU and on dialysis; 6 months to recover. I think I still have PTSD from that horrible event. Then, no meds for a year .... now re-started on the second-string of meds. *sigh* **

I'm currently taking IV Meropenem, Arikayce, Moxifloxacin (Avelox), Azithromycin. The Clofazamine may be started next month. I had no idea that I had anything wrong with my lungs until 2018... no idea that I had bronchiectasis or MAC (no cough!, but extreme fatigue that my PCP didn't pick up on for the couple years I mentioned it) .... I believe it could have been found many years prior .... and I wish it had. "It is what it is." *** As an additional note, I initially, in 2018 started with Rif, Eth, and Azithro, but 9 months in, had a "metabolic implosion" (MY words). A sudden severe reaction to the meds - sepsis, acidosis, hemolytic anemia, kidney failure, kidney dialysis, blood clots, atrial fib, internal bleed. 3 weeks in the hospital; 2 wks in ICU and on dialysis; 6 months to recover. I think I still have PTSD from that horrible event. Then, no meds for a year .... now re-started on the second-string of meds. *sigh* **

@janeta do you have MAC or MAI thanks Heather

Iniciei com a amicacina semana passada, 3 vezes por semana, dias alternados, segunda-feira, quarta-feira e sexta-feira. intravenoso, diluído em 100ml de soro. Estou feliz por que recebi hoje a quinta dose e não estou sentindo nenhum efeito colateral. Tomo associada a Ethambutol, Rifampicina e Azitromicina diários. Estes três último já tomo a 7 anos com 3 interrupções e 4 recidivas. Queira Deus que desta vez me cure.

Janeta, it's not uncommon to have PTSD-like feelings after an ICU experience. In fact, there's a name for it - Post intensive care syndrome or PICS. You may be interested in sharing your experiences with PICS in the ICU group here: https://connect.mayoclinic.org/group/intensive-care-icu/

Interesting that you ask that ... I've seen both written in different parts of my chart. The pulm doc always says MAI; my ID doc says MAC; my last sputum said MAC. I'm sure I saw MAI on an early sputum. I presumed they were essentially the same.

I think I understand, then, that Arikayce is a brand name of the drug Amikacin. Amakacin is given IV or injected. The inhaled Arikayce I take now is liposomal - yes, encased in a fat globule. Subjectively, I feel that the Arikayce is the most effective in bringing up - or at least just clearing - the teeny-tiny bit of sputum that I have. SO many drugs and I'm trying to learn! I think I've finally understood that there are multiple ways to treat MAC/MAI, it affects everyone differently, and that just because the Mycobacterium isn't completely gone, I can still have a somewhat fair quality of life ... that it's not a death sentence as I initially thought. THANK YOU for your comments.