Arikayce Approval

Has anyone been prescribed Arikayce use three times a week vs. every day, due to tolerance issues?

I use Amakacin 3 time weekly. I have not had any issues other than a dry throat.

@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.

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.

Thank you so much for sharing your experience. It is reassuring. Did your doctors suggest to dilute the Arikayce with saline, and does it in any way affect the efficacy?

I hope that you get resolution of your cavity. It is wonderful that you tested negative for MAC so soon after starting treatment. That is very encouraging for your prognosis. I always love to hear the success stories. Please let us all know how you are doing after your next NJH visit with your doctor.

I had Amikacin infusion 3 times weekly for 3 months and there were no problems except very dry mouth and super tiered right after the infusion for about 1-2 hours. I had a PICC line so I would not be poked constantly and it caused problems at the end (rash).

The doctors at NJH have me dilute the amikacin just so it’s not so harsh on the throat. They do this with every patient that has inhaled amikacin. It does not change the efficiency in any way because you still have to inhale all of the combined solution in the neb cup.

Thank you. I will ask my doctor about this.

I started Arikayce inhaling treatment 9weeks ago.once a day.from 4th week I started feeling very tired, lost appetite, cough terribly with a lot of sputum.But I continue my daily treatment.From one week ago I started feeling better, I can walk 12-13000 steps a day without much tiredness. I regain the appetite.My coughing reduces, and sputum coloring turns to clear. I feel more confident about the treatment. I am lucky only have limited side effects from inhaling Arikayce.Hope my experience will help the people want to try to start Arikayce treatment.

I started using Arakayce this week as part of my initial treatment. I am also on Azithromycin and Nuzyra. I received a notice that Arakayce was not approved by insurance because I had not had six months of therapy, but the next day I received a call that it had been approved. They also enrolled me in a program that makes my copay only $10 per month. So far, no side effects, but I’ve had only four treatments.

The trainer was very good. I learned more about MAC and abscessus from her than my pulmonologist and ID doctor.