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Arikayce
With a long standing history of bronchiectasis. I have now started Arikayce as part of my multi antibiotic treatment of MAC. As a result, my cough is now considerably worse than ever. It’s getting hard to get up every morning and face another day long siege of non stop coughing. Anyone else experiencing similar symptoms.
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Before you give up altogether on the treatment, maybe just try dropping rifamycin (rifampicin or rifabutin). I just finished a clinical trial testing just Arikayce, azithromycin and ethambutol because rifamycin is so hard to tolerate. Good luck!!
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3 ReactionsThanks. Page
I start on Arikayce next Thursday, I am terrified! The pharmacy/ insurance was $18000
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1 ReactionMost tolerate it well. I was able to complete daily 4 1/2 months and by then it was just too much coughing where I could,only complete 7-10 minutes and the Dr stopped it. I should have went on MWF, I could have handled that better. It does help eradicate MAC if the big3 does not clear it and is preferable to Amikacin IV when possible.
I'm on 2 or the Big 3 and Arikayce for 8 months. No side effects in the beginning, but now I'm getting more mucus in my throat. Is this the MAC getting worse or side effect of the Arikayce? I have a hard time clearing mucus, but should probably try some devices...
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1 ReactionI used arikace when I was treated 5 years ago. One of the antibiotics was problematic for me, so they stopped it and put me on arikace. It made me feel terrible. I was exhausted and coughing all of the time. The lung scan showed a that my lungs were inflamed. So the doc stopped all treatment, said I should feel bearer not worse. My current pulmonologist (stanford) is considering having me go back on treatment. She said that the current protocol is not every day, but every other day.
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1 ReactionYes, that every day 4 years ago was terrible. I only lasted 4 1/2 months
Arikayce was difficult on my lungs causing inflammation as well. But it certainly helped me cough up the junk in my lungs! My ID doctor gave me a vacation from it and put me on Nuzyra until things calmed down. When I went back on Arikayce it was for every other day.
And I was able to tolerate that. It’s been
Sorry I hit the wrong button. It’s been 18 months with a few set backs. But I’m making progress and have confidence in my doctor to help me through any problems.
I was only on Aikayce for 3 weeks and I totally lost my voice. When I was at NJH, they recommended inhaled IV Amikacin. Just a thought, since it's not as viscous as the Arikayce. I NJH took me off all the antibiotics and advises "watchful wait" but is and when I need to go back on treatment, I would opt for the inhaled IV Amikacin.