Side effects of Arikayce

I have mild COPD and have been taking arikayce for two years. No problems. I converted because of it so I’m a fan.

I took the Big 3 for 1 year and tested negative for MAC the entire 12 months. I also took inhaled Amikacin for 8 months and within that time it closed the 1.8 cavity I had. I really no side effects to speak of. NJH took me off of everything February 1st (Hallelujah) since I was doing so well. Now I pray to stay Negative for as long as possible.

I'd definitely try it. It works for most (not me). If it gets unmanageable you and your Dr can stop it. All my side effects stopped the next day which leads me to believe I could have benefited from MWF usage instead of daily.

Thanks Rick, this is really helpful!

Thank you! and congratulations!

Thanks for sharing your experience. So glad to hear you are Negative!

Thank you and I plan on doing my due diligence to keep testing negative. I know it can be a real roller coaster but I am staying very positive and enjoying my first week of no meds and a celebratory glass of wine. LOL

I've been on the Big 3 since 9/22 for NTM MAC and started Arikayce 7/23.
My experience with the side effects which I have tolerated but still worry about my voice changes and will it ever return to normal. They seem to be getting worse. A chronic cough has returned which is becoming increasingly harsh. I also developed white patches on my vocal cords discovered in 11/23 which have not yet gone away.
The good news is that I converted to being negative for MAC one month later and have had 4 negative cultures since 8/23. I have told my ID Doc about my worries and he will follow all closely. He also suggested I nebulize Albuterol before the Arikayce and continue the regimen until 8/24.
Anyone having similar side effects? Thanks, Frankie160

Hello!
I’ve had a similar experience on Arikayce with a hoarse voice that comes and goes, and rarely sounds like the real me. I also sometimes have coughing fits while inhaling it, but not always. For me, Albuterol did the opposite of what it was supposed to do, so I quit taking it. I am just working through it the best I can.
I thought I’d mention that I was at the ENT recently for a different reason and mentioned the hoarseness because it was a particularly long and severe episode. He took a look with a scope and did not see anything irregular. One of the things he was looking for was white patches which could indicate fungal activity that may have occurred from the antibiotics killing good bacteria as well as bad, thereby creating an environment where the fungus could grow. I did not have any white patches so I don’t know what next steps would have been.
As a side note, I mentioned the hoarseness to my Arikayce coach. She suggested gargling with warm (not hot) salt water after nebulizing. It seems to be helping, but time will tell.
Best wishes to you on your journey.

When I first started inhaled Amikacin I would rinse my mouth with warm saltwater after treatment or I would have a Tablespoon of honey. Either one worked the same to sooth my throat. I only had to do this the first month and never did it again and all was well.