Arikayce Approval

Did your dr tell you that your Arikayce treatment was complete?

Yes my doctor took me off Arikayce and all MAC meds. irene5

The pharmacy referred me to The Assistance Fund which makes my copay $10/month. I have just been reapproved for 2024.

Yay!!!!!

I have been on “the big 3” antibiotics since 2014 for MAC and Bronchiectasis. I am still producing positive cultures. I have not chosen to take Arakayce so far. Mayo and my local pulmonologist have recommended it - but the side effects concern me. I was recently taken off rifampin due to continual low white count. I have been hospitalized in the past for Hemoptysis and been treated for pseudomonas several times - the last time was two weeks of Cefepime infusion.
I am 75 and good health otherwise. I use nebulized Levalbuterol and 7% saline as well as SmartVest occasionally.
I honestly don’t want to be dealing with a 15 month commitment to the Arakayce treatment and side effects that I don’t have now. My pulmonologist said: you need to do this sooner rather than later.
He just put me on a new inhaler called Stiolto Respima for relief of tightness in my chest and pain and burning in my lungs. Your comments are welcome. Thank you and Be Blessed.

I didn’t convert after taking the big three for a year. They added Arikayce. I converted to negative in six months. Taking it for another year. It’s a wonder drug. The side effects are minimal . You really should try it.

Many people tolerate Arikayce well, others do not. If it does not work out you can always stop.
I was only able to last a daily treatment for 4 1/2 months and Dr took me off it. This was several years ago. Now they might try MWF, I wish I had that option available, I think I would have been OK. I was disappointed in Insmed support at the time since my Dr had not prescribed this before and Insmed referred all issues back to my Dr. Hopefully your Dr has experience with Arikayce in the past.

@lampstone what side effects are you expecting from Arikayce? You have been a Connect member for a long time and must have knowledge of how effective it is. I had minimal obvious side effects, and was on it forever. I coughed some when I used it. It is time consuming is all. It is an effective MAC buster!:) At our age I consider all options . I was my doctor’s guinea pig as it was fairly new when she filled out all the paperwork for the clinical study. My ID doctor was pretty firm about my prognosis . Sounds like your doctor is encouraging you as well. Give it a try. What’s the worst thing that can happen? You have some side effects you don’t like. What’s the best thing? MAC will be gone. Think about it. Irene5

I have a question that I have not seen a comment on. Today was my second day on ARIKAYCE. The first day, yesterday, was with a trainer. The nebulizing was a breeze, 10 minutes, then auto shut off the bowl was empty. Albuterol and 7% saline mixture took 25 minutes, twice a day, depressing.
The cleaning and sanitizing, WOW! Boiling distilled water seems a little redundant; it is about a quart of water, after using 5 minutes, it is down the drain. Does anyone put a cover on the pan and use it the following day?
One of my big three is NUZYRA (2) 150mg, I cannot eat 4 hrs. before and 2 hrs. after also no dairy products or vitamins for 4 hrs. after. I am getting up at 6 am to have lunch with my wife at noon. At 8 am I’m nebulizing and finished by the time she gets up; but I’m boiling stuff on the cook top, I have instruction on the kitchen table, a descriptive pad and a special lint free towel on the counter; she walks in and say Good Morning and I’m looking for something to throw besides my stomach contents.
My final question, humor aside is, can I reassemble the hands set once the components are dry or do I have to wait until the next morning just before I use it? I’m thinking everything is squeezed together for many hrs., in time it might affect its seal. Did you reassemble it the day before? I know the medication goes in just before I nebulize.

Hi pattysyarns, my experience with working while on IV Amikacin was fine, once I had recovered enough to go back to work. My ID doc recommended one month of IV Amikacin along with the usual azithromycin, ethambutol and rifampin due to having a small cavity with MAC. I declined IV in favor of inhaled because I didn't want to be walking around a medical center with a PICC line. I declined the ethambutol because I had been on it twice before and I didn't want to risk the vision impairments (my mother became legally blind due to this med). Unfortunately, three months later, I ended up admitted for five days because the treatment didn't work and the cavity was now large. Subsequently, I was on IV Amikacin for six months (until I developed tinnitus), and the ethambutol. After six weeks on sick leave (I was too sick and weak from pushing it at a new job), I did six weeks on halftime, then was ok to do a 40-hour work week. In retrospect, I should have done what ID recommended to begin with, but I was more concerned with appearances and perception of health and didn't realize I could get sicker. Everyone may have a different response, but I hope that sharing my experience helps.