Loss of voice after Arikayce nebulizer

I just finished todays’s treatment. Past few days, it takes 16 mins compared to 12-13 mins earlier. I used to breathe rapidly before. I calmed down now and am breathing regularly! That must be it!

Any idea whether to continue with Arikayce even if hoarseness gets severe?

Hi @saminatt
I too experienced hoarseness with Arikayce. It is a well documented side effect. It eventually went away with continued use. However- I never lost my voice completely. Your best bet is to discuss this with your doctor. Take care, and I pray you get relief soon.

Thank you!! I was trying to find if I can continue even with hoarseness? My doctor said to talk to Arikayce care team. When I called the care team they said they cannot advise. Only my doctor can advise. My ID doc said I am the 3rd patient who is on Arikayce. At the end ID doc said to use it on alternate days.
Thank you for your supportive words. Losing voice is so scary!

I lost my voice right away, but also coughed blood and got a rash on my belly. All that wait and prep but not for me.

Hi All and especially to those who have experienced voice changes using Arikayce.
I had an early success startging this drug on July 12, 2023. By the end of August, 2023 I had gone negative for MAC for the first time (I had been on the Big 3 since Sept. 2022) and the protocol was to stay on Arikayce for at least 6 months or longer after going negative. Voice changes started after the first 3 weeks of starting Arikayce and gradually got worse over time. In January 2024, the voice changes and horse throat got very bad and I also noticed a decrease in my breathing capacity. I asked my Infectious Disease Doc for a new strategy especially since the vocal cord specialist I consulted with was inclined to want to biopsy my throat since there was a great deal of white patchy stuff all over my vocal cords. I was taken off Arikayce and within 3 weeks, my voice was almost back to normal which was a great relief.
In April, 2024, I was taken off the Big 3 after more than 2 years and my lung health continued to improve. It CAN GET BETTER so hang in there and continue advocating and communicating with your doctors on a constant basis.
Flo @frankie160

After 18 months of 3, then 4, oral antibiotics and still MAC positive, I started Arikayce. I used all the recommended strategies (gargled with a mixture of glycerin and warm water before tx, gargled with warm salt water after, then had a hot drink) and lost my voice completely after 6 treatments. Time of day of tx made no difference. I stopped Arikayce and my voice returned to normal after 2 weeks. I then went back to it on the Mon-Wed-Fri schedule and cleared completely after a total of only 20 treatments! I am looking forward to 7 more months of treatment and then being finished. The 3x/week regimen is also much easier to incorporate into everyday life.

Oh fantastic!! There is life beyond yonder! Thats good to know 3 alt days a week is better than daily! I am having more of cough now! I am doing all gargling and cough drops now!
No one treatment fits all in Arikayce!

Also, you have to rest your voice may not be accurate advice. As i talk more, my voice was getting better! I just started the 3 day treatment. My pulmonologist asked me take Mucinex once daily to clear the lungs. Not the extra or DM types!

By the way, the pharmacists at Maxor Specialty Pharmacy (where I get Arikayce from) are free at anytime to provide information and are able to give clinical advice as well. In speaking to one pharmacist, I was advised to wait until my voice returned and then re-try. In my previous post about resuming Arikayce on the MWF schedule, I neglected to mention that not only did I clear very quickly (7 daily treatments, plus 14 MWF treatments, 20 total) but that I have no side effects whatsoever.