Arikayce

I was put on Arikayce after being taken off one of the big 3 for eye issues. After a few months I developed a terrible cough and had to be taken off it. In just a few weeks the cough was almost gone. I truely feel the cough was a direct cause of Arikayce. I hope this helps in some way. Stay strong and you can beat this terrible disease. I had MAC for 7 years and at age 77 beat it! So far I am fine but know it can always come back, but I beat it once and will again as will you!

Are you on Arikayce daily? I totally lost my voice down to a whisper. I have mild tinnitus, and it got worse, but now seems to be back to normal. I was 3 weeks into my treatment when I went to NJH, they had told me they would have had me on a 3 day per week schedule. Also, due to the severity in my loss of voice, they suggested I inhale IV Amikacin 3 times per week instead of the Arikayce. Maybe something to try. Fortunately, after all my testing at NJH, I was told that due to my low MAB I could go off the antibiotics-at least for now.

I also totally lost my voice, a lot of my hair and half of my eyebrows and was taken off of it after just a week.

Maybe those who cannot tolerate the daily Arikayce can tolerate the three times weekly? I do it three times a week along with Azithromycin and Ethambutol and am doing fine.

I have read that some people experience severe throat soreness, coughing, lung exacerbations, etc.. while on Arikayce. I just had a thought. Secretory IgA is an immunoglobulin that is found lining the gut, lungs, etc… and helps to protect it. Some people have low levels. It can be tested. Again- just putting this out there- colostrum powder supplements are known to increase the IgA levels, among doing a number of other things. I can attest to this because years ago, I had a really thorough GI testing for gut microbes, etc.. I was found to have low IgA levels. Never thought much about it until my pulmonologist, for research purposes, checked all of my immunoglobulin levels. I have been using the colostrum powder every day for a year and a half. I have had absolutely no GI complaints on any of these meds. More importantly, my IgA levels are now at the top of the range.

Mind you, I also take a really good probiotic blend (several), and that may play a part, but most of our immune system is in our gut, and what I have been doing has helped me and enabled me to continue these meds with minimal to no side effects, and I have always had a sensitive system.

Just a thought.

My spouse is likely going to start Arikayce in the next week or two, after having been on azithromycin and ethambutol for 8 months and with smear-positive MAC on the most recent sputum test. He needs to minimize the side effects - especially the hoarseness and coughing, as he's currently looking for a job so he needs to appear healthy with a strong voice for interviews. We just started looking into what to do to help minimize these side effects but would greatly appreciate any suggestions. We've read about people gargling with warm water - some said they put salt in it and some may put glycerin in it. Some people mentioned using a bronchodilator beforehand - maybe to prevent coughing? We're open to all ideas that can help! Thank you!