I was on the inhaled Arikayce for 12 months/7 days a week; then 3 x per week for 3 months. I stopped Arikayce due to permanent hearing loss. I lost 33% in my right ear and 20% in my left ear. My hearing has not improved since stopping Arikayce. Azithromycin can also cause hearing loss. I also had extreme hoarseness. A couple of times I completely lost my voice. When I lost my voice and I experienced hearing difficulty, that is when my ID doctor told me to go 3 days per week. And, my ID doctor referred me to an ENT specialist for a hearing test. That is when I learned of permanent hearing loss. Arikayce, I think, did help my MAC, but my ID doctor and I decided that adding hearing as an issue was not worth it fearing the hearing damage would worsen.

I also had an EXTREMELY salty taste all of the time. When I would drink a glass of water it tasted like drinking salt water. Every bite of food tasted like pure salt. It was unbelievable. Now that I am nebulizing 3% or 7% saline I still have some salty taste, but nothing like while inhaling Arikayce.

If you experience any unusual side effects I would notify your doctor and your Arikayce Coordinator of your side effects. Everyone is different; consequently, we can all have different side effects or no side effects.

I wish you the best of luck.

Take care and stay safe.

Cathie