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Arikayce Approval

MAC & Bronchiectasis | Last Active: Feb 23 6:12am | Replies (36)

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@pattysyarns

Hi Lilianna: I just read your post and have some questions about Amikacin IV which my ID and Pulmonologist suggest I do...MAC and bronchiectasis with two cavities. I know you said three times weekly, but was that once a day...and did the side effects go away after a few hours. I currently have no symptoms of any of this and while I want to reduce-eliminate the cavities and have negative sputum, I'm nervous about side effects and having to function at work while on this IV medication. Any suggestions would be most appreciated. Thanks

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Replies to "Hi Lilianna: I just read your post and have some questions about Amikacin IV which my..."

I was on the inhaled Arikayce daily for probably two years and had no substantial bothersome side effects . I am retired but probably could have been ok at work while on it. Good luck! Arikayce does its job quite well. Irene5

I was on Amikacin IV MWF for 12 weeks. In week 5, I got dizziness (could not drive for a few days). Dr cut the dose by 20% and I was able to complete the treatment. I had/have Mac + cavitation.

Hi pattysyarns, my experience with working while on IV Amikacin was fine, once I had recovered enough to go back to work. My ID doc recommended one month of IV Amikacin along with the usual azithromycin, ethambutol and rifampin due to having a small cavity with MAC. I declined IV in favor of inhaled because I didn't want to be walking around a medical center with a PICC line. I declined the ethambutol because I had been on it twice before and I didn't want to risk the vision impairments (my mother became legally blind due to this med). Unfortunately, three months later, I ended up admitted for five days because the treatment didn't work and the cavity was now large. Subsequently, I was on IV Amikacin for six months (until I developed tinnitus), and the ethambutol. After six weeks on sick leave (I was too sick and weak from pushing it at a new job), I did six weeks on halftime, then was ok to do a 40-hour work week. In retrospect, I should have done what ID recommended to begin with, but I was more concerned with appearances and perception of health and didn't realize I could get sicker. Everyone may have a different response, but I hope that sharing my experience helps.