Arikayce for cavitary MAC

I did IV and later inhaled. In my case, I'd say the tinnitus was worse with the inhaled. I'm more complex than the average case, I have a lot of scar tissue in and around my cavity that still exists 7 years later.

I did IV Amikacin for 2 months and now I’ve been on Arikayce for 13 months, very little reduction in cavities

I took amikacin inhaled and three oral antibiotics for 4 months but cavity shrank only 5% ( from 2.1cm to 2cm) from August 2024 to December 2024.
Started arikayce last month and my cavity shrank another 10% ( from 2cm to 1.8cm) since December 2024. I believe it is largely due to Arikayce.
In addition, I had 2-3 cavities last year but today's CT showed only one cavity. All other nodules and cavities are gone.

@knully I have nodular BE with cavitation (two stable cavities under 2cm - size matters) and I have been recommended the Big 3 together with Arikayce (all daily). My local ID initially prescribed Big 3, three times a week, plus IV amikacin (three times a week for first three months only). However, NJH recommended a drug protocol of Big 3 daily, plus Arikayce (daily) instead of IV amikacin, due to the severe side effects from IV amikacin. Again the Arikayce is expected to be daily, assuming that is tolerable (Arikayce is certainly not without its own side effects). I have not started treatment, yet.

I feel I am not as "smart" as before after I startedAarikayce, easily distracted and cant focus well, probably due to side effects from Arikayce. Does anyone experience the same after taking arikayce? I take it three times a week due to fear of hearing loss.

I developed tinnitus during the course of treatment (IV and the big 3). My tinnitus continued to get worse after stopping the IV Amikacin and continuing with the Azithromycin. My pulmonologist switched out the Azithromycin for Clarithromycin and this helped to stabilize the tinnitus. This protocol to switch to Clarithromycin was suggested by Dr. Griffith (NJH) in a couple of his seminars. Just an alternative to keep in mind during the course of your treatment.

Thanks for sharing your experience with tinnitus and the options your Dr provided. I’m not on the IV meds but did have to start Cresemba in addition to the big three which has been really tough. I’m doing follow up on the tinnitus now to see what the protocol will be as it’s nearly constant along with sinus headaches and nausea.

I just finished my second treatment of Arikayce, so can’t speak much on side effects. I will say administering in the evening and following with some tea and honey seems to be pretty effective in calming the more immediate throat irritation and hoarseness. I’m not a fan of the daily dosing and involved cleaning and sterilization, though this is my first experience with a nebulizer.

This is good to know, thank you for the recommendation. My baseline hearing test was normal and tinnitus is no worse, so hopefully it remains stable while on Arikayce.

I have definitely been feeling foggier and more fatigued in general since starting treatment. The duration and intensity of MAC treatment is emotionally and physically taxing.