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mch (Marycarol) (@mch)

Arikayce Approval

MAC & Bronchiectasis | Last Active: 6 days ago | Replies (36)

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@formergardener

@tconz, thank you for your reply. I am worried that I may experience some some hemoptysis because it is listed as a possible side effect. I have experienced it before. Do you notice any change in your hearing or kidney function when using it only 3 times per week? I am on Azithromycin and Ethambutol 3 times per week also. I wonder if patients who add the Arikayce daily experience culture negativity sooner than those who use it only three times per week. Using the other two drugs for 4 months brought me to sputum negative and only a few colonies on culture. I still don’t have results from months 5 and 6, and I am wondering if I should use the Arikayce daily. I will be having someone from the Arikayce company come out next week to train me on usage. My doctor is excited that soon Arikayce will be allowed to be used as part of the initial treatment, instead of having to wait. It is so hard to wait for new treatments to finish all of their trials before full approval for wide use. From what I am reading, patients who add the Arikayce have very good results. I hope that everyone soon can have the opportunity.

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Replies to "@tconz, thank you for your reply. I am worried that I may experience some some hemoptysis..."

I have not experienced any hemoptysis, hearing or kidney issues. I am also on Azithromycin, Ethambutol, Rifampin, sodium chloride and levalbuterol daily and my ID checks my liver and kidney function every 3 months. I also get my eyes and hearing checked every 3 months as well. I have been on the Big 3 for 9 months and tested negative 8 months ago for MAC and have continued to do so. I started Amikacin 4 months ago because the cavity in my left lung had not changed. I go back to NJH in November and I am hoping my CT scan looks better. My doctors at NJH did not want me to use the inhaled Amikacin daily ONLY 3 times per week. It is harsh on the throat and vocal cords if used much more. I dilute mine with sodium chloride to make it more tolerable and less side effects. I hope you can tolerate the Amikacin because I hear people have good results.