Arikayce

Following.

Is the device used to take Arikayce difficult to take care of? I'm low vision.

Anyone have weird hearing/ear issues after starting Arikayce and does it go away? My Dr put me on a 2 week break. My schedule is normally mwf

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.

The disinfecting is daily, so boiling every day. As I mentioned in my previous post, NJH recommended IV Amakacin 3 times per week in lieu of Arikayce. That is inhaled via a nebulizer.

GM, I had Chronic Cough from 2015 to 3/2/24. It was pretty bad. I sucked on a lot of cough drops, took tesslon pearls, gargled tried different remedies family or friends would suggest at night it was worse. When I started inhaling the Amakacin and then Arikayce it made it worse if that was possible. Once I had a Double Lung Transplant it was gone and no one really understood just how grateful I was as this alone was worth all we undergo during testing for a transplant. I now cough very rarely and am so grateful. I took Amikacin/Arikayce for MAC for a little more than a year. The inhaled and the picc line. I ended up having bad side effects and they stopped it. I was not able to obtain a negative culture during the time I took these and was going through evaluation for transplant at UCLA and was approved and very grateful.

I'm sorry to hear that you had to go through that. I'm hoping and praying I don't have to. You are brave to go through that.

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!

I landed in the hospital due to adverse effects of rifabutin. My white blood cells were almost gone. This was the third one of the related pills. The other ones raised my blood pressure too much. Then Arikayce. I'm losing my hair, eyebrows, and voice after one week and was taken off all the antibiotics (including the other big two). The doctor will wait 3 months to do another culture and reassess.

I was put on rifabutin ethambutal & biaxin in 2002 after being diagnosed with MAC. Within one week I was in the hospital in Washington DC with pancytopenia - a five day stay while they tried to figure out what was going on thinking they would have to do a bone marrow transplant because in those days they didn't understand at all. Thankfully, all numbers started coming back up as soon as I was taken off rifabutin and put on rifampin. I did very well for the next 18 months until a bronchoscopy showed no sign of Mac. I have been free of it since then. But now, of course, have bronchiectasis.