Side effects of Arikayce

I complained to Arikares/Kroger/pulminologist every month of my treatment. Pulminologist stopped my treatment at 4 1/2 months. Even pitched 6 weeks of bottles since no one would take it back (but they take back the shipping container?)

My love/hate relationship with Arikayce continues. Yes, it appears to have helped with my now 4 negative cultures for MAC and when I met with the Chief Pulmonologist on 2/15 we celebrated and then got down to business. I learned that she and the ID Doc are working closely together to help with my current chief complaint, a decrease in my breathing capacity/shortness of breath and the horse throat that is mostly on going and the white patches on my vocal cords since 7/10/23. My Pulmonologist said that she would like me to first do a CT Scan and a PFT and based on these results and a 5th negative culture which we are expecting, she and the ID Doc may want to discontinue Arikayce at this time. Because of my COPD, it is possible that Arikayce may be too much of an irritation to my lungs. I think both Docs will want me to continue with
the Big 3 for another few months. I will continue with enhanced AWC techniques and Respiratory Therapy which right now is based on building up my endurance. I have gotten some tips on how to breathe and hope to ask for more help in that area.
Always moving forward. Thanks to all for your constant support!

I was hoping Arikares/Insmed would have been more attentive to patients like me with more complicated conditions such as Mac + copd and cavitation. They could have received good data.

Thanks, Pamly for your comments on 2.12 which I found very helpful and comforting knowing I'm not alone. The voice changes are worse and the white patches on my vocal cords still continue. It was improving with fungal med but never cleared up. Seeing ENT again next Monday.
Waiting for ID Doc and Pulm Doc to review tests and make a final decision about an early Holiday from Arikayce. Have not been consistent with gargling with warm water but will try harder....Now I have dental issues to add to the party.

You said you had dental issues. I am on the Arikayce and since being on it my teeth have been sensitive which I didn't have until put on Arikayce. Is that an issue your are having?

I too have just started taking Rifampin, Ethambutol and Axithromycin . Now , with the advice of Mayo infectious Disease Docs, I am about to start Arikace and a new drug called Nuzyra. Energy levels are way down, appetite poor and overall feeling of malaise and fatigue is with me. After three weeks of the first three, cough continues unabated. I also uses Albuterol, Sodium Chloride and a percussion vest.

Welcome to Mayo Connect, and our very helpful and compassionate MAC Support Group.

This infection, and the antibiotics, can indeed knock you down. Just remember what my first pulmonologist told me "MAC is slow to grow and slow to go" - hence the long term use of multiple antibiotics.

The good news is, if you tolerate the Arikayce, it is showing a track record of quickly knocking down the bacteria, then you can continue just the "Big 3" for the recommended time. Nuzyra is often added if there are other bacteria in addition to MAC in your lungs - I am not sure of the duration of that treatment.

You may find some of the links here helpful:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
As for your poor appetite - please don't ignore it. Start now to find a high-caloric-density regimen that works for you. And a good pro-biotic to help your gut biome. This is an older discussion, but very relevant. 8-10 mini-meals a day was what I could tolerate on the Big 3.
https://connect.mayoclinic.org/discussion/weight-gain-1
Low energy, malaise and fatigue are all your body telling you to rest. Try using your limited in 10-15 minute "bites" each hour - load the dishwasher, put in one load of clothes, walk to the mailbox...Try to get outside everyday for a while. It will do wonders for you spirits.

And please come back and talk to those of us who have been through it - there is a light at the end of the tunnel. We're here to help!
Sue

Rick what were the issues you had with Arikayce?
I am considering using it

I've hear many success stores with Arikayce? I was able to to complete 4 1/2 months, early on were headaches and tinnitus but by that 5th month, my coughing during the treatment got so bad I had to stop the daily treatment between 7-10 minutes. I complained daily to Insmed, Kroger and UCHealth for some type of remedy. Nothing so my Dr said stop. I hear nowadays that some patients can do MWF, instead of daily. I wish I could have tried that 3 years ago.
Since I have cavitation also, I though Insmed would be interested in my case, but I was just a number. I believe the cavities traps the vaper and exhale was an problem?

I was on Arikayce 7 days a week for 1 year; then 3 days a week for 3 months. When I began to notice that my ears felt stopped up causing hearing issues, I mentioned the symptoms to my ID doctor. He recommended I have a hearing evaluation from an ENT doctor. The hearing test determined I had lost 33% hearing in in right ear and 20% hearing in my left ear. My ID doctor immediately took me off Arikayce since we both agreed I did not need any more issues. Unfortunately, my hearing did NOT return as my ENT doctor predicted. The ENT doctor said it was highly unlikely that I would regain the hearing loss; that IF I was lucky I might gain a little bit but not fully. It has been a year and I can't tell any difference. While I was on Arikayce I also had an extremely salty taste ALL OF THE TIME! When I drank water it was like drinking salt water, desserts had a salty taste. It was awful! I discussed this issue with my Arikayce Coordinator, who said that only 5% of Arikayce patients have a change in taste, but that change wasn't defined.

I was also taking Azithromycin 7 days a week, which can also cause hearing issues. I'm still on Azithromycin every other day and I can tell the days that I take the Azithromycin that my right ear hearing, in particular, is impacted.

Arikayce can be extremely helpful for some but for others, it can cause extreme side effects.

Good luck and I wish you the best on your journey with your lung issues and hope Arikayce will be highly effective for you.