1. < MAC & Bronchiectasis

Arikayce

Posted by pa 111 @pagechapman, Mar 26 10:43am

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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thorne | @thorne | Apr 7 9:17am
In reply to @pagechapman "Yes I am in exactly the same spot. I have been on Arikayce for only a..." + (show)
@pagechapman

Yes I am in exactly the same spot. I have been on Arikayce for only a month and my cough is worse. That plus the big three anti biotics have me feeling so badly I am about to suggest to Docs that I can’t go on. I am almost 86 —- is it worth it all at this point in my life??? Good luck.

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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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pa 111 | @pagechapman | Apr 7 9:20am
In reply to @thorne "Before you give up altogether on the treatment, maybe just try dropping rifamycin (rifampicin or rifabutin)...." + (show)
@thorne

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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Thanks. Page

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reneemc | @reneemc | Apr 7 12:07pm

I start on Arikayce next Thursday, I am terrified! The pharmacy/ insurance was $18000

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Rick | @rstel7272 | Apr 8 9:28am
In reply to @reneemc "I start on Arikayce next Thursday, I am terrified! The pharmacy/ insurance was $18000" + (show)
@reneemc

I start on Arikayce next Thursday, I am terrified! The pharmacy/ insurance was $18000

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Most 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.

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