IV-Amikacin or Arykace or Both--Which Order?

Posted by ddemark01 @ddemark01, Sep 30 11:12am

I have had Bronchiectasis for many years and MAC on and off. Originally diagnosed in 2011. I started taking Azithromycin and Ethambutol in 2021 (could not tolerate Rifampin) when my CT scans showed some deterioration. About a year and a half ago I developed a cavity. For the last 9 months i have not been able to clear the MAC and have stayed positive. That is a change from before. I have had many sputum tests. And so now, I have been advised (mostly) that in this situation I need to go on the IV for 2 months and then Arikayve to clear the infection. One Dr said you might do just as well on going to Arikayce first. And so this is the question: What is everybody's experience with the IV? I know the most significant side effect is hearing. I don't know much more. Has anybody with a cavity just gone on Arikayce first and what your results? What are people's experience with the IV? I am very concerned going that route but it may be best. I want to continue exercising (pickleball) and not sure if I'll be able to. Thank you for your input.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mary | @mjb24 | Sep 30 4:11pm

@ddemark01 I was diagnosed with cavitary MAC in 2024 and put on Azithromycin, Ethambutol, Rifampin and IV Amikacin. After only 2 weeks, I was told that the Amikacin was not susceptible so it was stopped and I was then put on Arikayce. IV Amikacin is stronger and can be harder on the body for sure but your doctor should closely monitor you. From what I have read and been told it can be very effective and is typically first line with the big 3. Personally, I would go with the IV in the hopes that it can really knock it down and then Arikayce can be added later.

smtdoc | @smtdoc | Oct 1 7:46am

I was on IV Amikacin M-W-F for one month and felt better within about 2 weeks. Diagnosed with Bronchiectasis and Mycobacteria Abscessus. Now I am on Arikayce but treatment has been paused because of an apparent hearing loss.

detsdum | @detsdum | Oct 1 10:46am

I have cavitary MAC, 2 large cavities. Did Azith, Etham daily and IV Amikacin MWF for 4 months. Cavities closed significantly. No problems with the meds. Nurse came weekly and changed the dressing on the PICC line and drew blood to monitor liver, etc. Now on Azith, Etham, and Arikayce. Still no problems with meds. Only drawback with the IV is that the arm with the PICC was restricted to lifting no more than 10 pounds , no water submersion, and limiting continuous, repetitive arm movements like vacuuming, golfing, tennis, or heavy bicep curls. to prevent dislodgement of the PICC or infection. That effectively put a cramp on my workout program for 4 months but it was worth it to see the significant improvement in the cavities. Was still able to keep up cardio as long as it didn't include a lot of arm movement.

reneemc | @reneemc | Oct 1 11:58am

I have done the Amikacin 3 times a week. Once for 8 weeks in 2023 and 3 times a week for 12 weeks in 2026 . Did Arikayce almost 3 years. No change in cavities.

ddemark01 | @ddemark01 | Oct 2 10:21am

Was either treatment able to clear the MAC infection which I can't seem to clear?

kasper1 | @kasper1 | Oct 2 10:54am

I tried the arikayce and I could not tolerate it . Lost my voice and breathing was worse . My cavity has gotten bigger and doctor said we will talk about it next visit.