Arikayce

I struggled through 4 1/2 months of daily doses. By the 5th month, I could not complete the 14 minute treatment and had to stop 7-10 minutes in. With no advice from Insmed or Kroger, my pulminologist stopped the treatment.

When I started Arikayce, my cough was worse especially during the treatment which I do at night. I also lost my voice the first couple weeks. I started gargling with warm water after treatment and doing the treatment shortly before bed so that my vocal chords, throat and air ways could rest better. These side effects eventually got better. How long have you been on all of your treatment including Arikayce?

My new ID doctor just took me off Arikayce for the same reasons that you stated - the constant coughing 24 hrs a day and night! Also I was getting light headed issues and at 77 can't afford a fall. The constant cough was leading to a sore throat by evening. I was on Arikayce for 8 months. He is putting me on another med but can't remember what, something fairly new.

I’ve been taking arikayce for 32 months. The coughing, hoarse voice, and raspy throat ended after third month. No side effects since then. My treatment ends in July. Hang in there.

Ncalvan, wow 32+ months. Is the treatment daily or MWF?
-Rick

I just applied for Arikayce this week. Don’t know if my insurance will pay.
The warnings on the package are pretty scary.

Medicare covered mine

May I ask why you have been taking Arikayce for 32 months? It is known to work pretty quickly and it recommends taking it for 12 months after culture negativity.

May I also ask if you experienced fatigue from Arikayce? I have had no side effects from it other than profound fatigue.

There is a study from Japan that people who stayed on antibiotics for 15 or more months after negative cultures had less relapse
I did 18 months- about 20 months total as it worked fast for me. Mostly daily

Daily. I converted to negative 14 months ago. I’ll take it until Aug. about 18 months after converting