Side effects of Arikayce

Hi - I have been on zithromax, ethambutol, and rifampin for 1 1/2 years, and additionally clofazimine for a year with no improvement in my MAC infection. Sensitivity tests show that my infection is sensitive to all these drugs. I fortunately have tolerated the treatment well. I recently started Arikayce in addition to oral meds, and lost my voice completely by day 7, despite pre-treating with a glycerine and water gargle, and post-treating with saline gargle and a hot drink. I was instructed to stop Arikayce until my voice returned to normal and then try the 3x/week regimen, which I hope I can tolerate. Any thoughts, suggestions, or similar experiences?
Thanks!

The 7 day is brutal. You are lucky to have your pulminologist change the schedule to MWF. I was not so lucky a few years ago. Voice loss is one of the more minor side effects possible.

Thanks, Rick. It was actually the pharmacists at Maxor who recommended this strategy. They can direct treatment, apparently. So I just informed my ID doctor that this was what I was going to do. I hope it works because I am otherwise out of options. Were you able to continue on the Arikayce? I otherwise had no problems, at least in 7 days!

I was on Arikayce in the early days so only daily treatment was allowed per fda guidelines.
Insmed was no help, I could not make it through the 5th month as I could only tolerate 7-10 minutes of the treatment. Things have changed now but I have ear damage from it so never again

Hi, I am Jane and had to get off Arikayce do to a constant cough. I would cough thru the procedure of taking the medication and all day and night, so much so as my husband was very concerned. I got very congested while on the medication. My Dr took me off the medication for this reason.

Hi, I am Jane and had to get off Arikayce do to a constant cough. I would cough thru the procedure of taking the medication and all day and night, so much so as my husband was very concerned. I got very congested while on the medication. My Dr took me off the medication for this reason.

What are you taking now?

My last CT scan was ok and was taken off all antibiotics after over 7 years. I am now free of MAC. At 77 I feel very lucky to have beaten this disease. I know it can come back so am being very cautions. Good luck to you just keep the faith it can be beaten.