Loss of voice after Arikayce nebulizer

lol, so glad to see these comments about Arikayce. I thought i was the only one who was having issues and the doctor was not happy with me. I understand that Arikayce is very helpful and i really wanted to be able to continue with it. After reading everyones comments, i dont think my doctor had much experience with the drug. Yes, i even had the trainer come to my home and advise me. My MAC was asymptomatic. I was prescribed daily treatments of the Arikayce. I was only able to complete 8 treatments before my multiple issues happened. The mfg said yes, i was having adverse affects from Arikayce and advised me to discontinue. My doctor was furious but he wouldnt return my calls. The biggest problem, i lost my voice! Not a whisper or squeak , it was gone! I was still working at this point. Everyone assured me the voice would return very quickly. It did not! zTook two months for my larynx to recover from those 8 treatments with Arikayce. As a result, i lost everything! My car, my home, my pets, my job! I have not recovered from those losses, one year later. I cannot afford the copays for the big three and have not seen a doctor since.

Hi, after completely losing my voice during the first week, i was able to continue with Arikayce alternate days (3 days a week). Manageable. Due to severe nausea I am taking triple antibiotics on alt days too alternating with Arikayce!
In the mean time I had eyelid surgery to correct Ptosis. Held off 2 Arikayce! Now continuing. Only bothersome side effect is cough!! Still working!
I putting up with the cough! Hot water with honey, hot ginger water with honey snd halls! Managing ok.
Thinking about getting water filter in kitchen sink.

Hi, when say you cleared, does that mean your mac test was negative or you got your voice back? I have Arikayce in my fridge and have been holding off because I have ulcers on my lungs from a month of albuterol, then 3% hypertonic saline. (I use a volara instead of a vest)

My MAC cleared, tested negative. I got my voice back after stopping Arikayce for 2 weeks, then went back on it on the 3x/week schedule and had no loss of voice or hoarseness.

Thank you, sounds like it really helped

Yes - I cleared very quickly on the 3x/week schedule, no side effects, and that was after 18 months of the big 3, 3x/week, then daily, then adding clofazime - my samples always "resulted" positive within 4-12 days!

I am starting arikayce next week. My njh dr told me only three days a week which I am thankful. I was on amikacin iv for two months caused extreme ear ringing. I am having surgery to remove part of my lung. Meds are not working

One of my pulmonologists advised using arikayce in room with closed door so as not to "share" with others.

@hbcupcake how do you know you have ulcers on your lungs from albuterol/saline? It’s an interesting comment I have not heard before.

Interesting!! Amikacin does not have carcinogenic effect. Not sure if it has any teratogenic effect. If anybody pregnant, they should not be close by! If anybody has info please share!