Side effects of Arikayce

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.

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.

I have been on arikayce for 5 months. Got through the horsness but now I have trouble catching my breath so much so that I have to sit down as it is hard to breath. This happens a few times a day and a little scary at times. Has anyone else been through this?

Laura - If this is a new symptom for you, it is very important that you report it to your doctor as soon as possible. It can possibly indicate something new going on in your lungs.
Are you able to do you airway cklearance without shortness of breath?
Sue

Airway clearance never worked for me. I tried it for over a year and could never get anything up. I even went to the outpatient lab and they tried different techniques to help but nothing worked. The Arikayce helps but after the procedure that is when shortness of breath happens. I have an appointment with my new Dr next week as we have moved and had to get all new Drs. Thanks for your reply I have been reading your replies for almost 2 yrs.

Airway clearance never worked for me. I tried it for over a year and could never get anything up. I even went to the outpatient lab and they tried different techniques to help but nothing worked. The Arikayce helps but after the procedure that is when shortness of breath happens. I have an appointment with my new Dr next week as we have moved and had to get all new Drs. Thanks for your reply I have been reading your replies for almost 2 yrs.

It sounds like you have what is known as Dry Bronchiectasis, which I am starting to believe is more common than we once thought.
If I were in your situation, I would probably ask my doctor about the possible things to help with the shortness of breath.
Assuming you are like many of us, and would prefer not to add more medication to your life, first I would ask are there breathing exercises that can be taught by a respiratory therapist to help improve my lung capacity? This of course will depend on the overall condition of your lungs, but every little bit can help.
Then, I would ask is there a "rescue" inhaler I can use when this happens?
Finally, if already using albuterol or something similar, I would ask if there is something else in the treatment arsenal. For example, I also have asthma, and in addition to nebs, I was using my rescue inhaler (an SABA) way too much and still having shortness of breath and a tight feeling. My pulmonologist switched me to a combination inhaler that was previously used primarily for COPD. It is Symbicort (a LABA/ISC) - you can read about the different kinds of inhalers here:
https://connect.mayoclinic.org/discussion/is-anyone-else-confused-about-all-those-inhalers/
If the doctor feels the steroid is contraindicated, LABA meds are also available by themselves.

Good luck with the new doctor.
Sue

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