1. < MAC & Bronchiectasis

Arikayce Approval

Posted by mch (Marycarol) @mch, Apr 13, 2023

Doc recommended Arikayce to replace Ethambutol since the latter caused vision issues. I was not approved for Arikayce by Medicare since I do not meet the baseline criteria of positive sputum after 6 months on drug regimen. Plan to appeal, but concerned about likelihood will be approved based on the Ethambutol toxicity issue. Wondering if anyone can share success (of failure) stories regarding Arikayce in similar circumstances. Thanks.

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formergardener | @formergardener | Oct 7, 2023

Thank you to all of you for the invaluable insights and for sharing your experiences.

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mimifeels | @mimifeels | Oct 28, 2023
In reply to @tconz "I have not experienced any hemoptysis, hearing or kidney issues. I am also on Azithromycin, Ethambutol,..." + (show)
@tconz

I have not experienced any hemoptysis, hearing or kidney issues. I am also on Azithromycin, Ethambutol, Rifampin, sodium chloride and levalbuterol daily and my ID checks my liver and kidney function every 3 months. I also get my eyes and hearing checked every 3 months as well. I have been on the Big 3 for 9 months and tested negative 8 months ago for MAC and have continued to do so. I started Amikacin 4 months ago because the cavity in my left lung had not changed. I go back to NJH in November and I am hoping my CT scan looks better. My doctors at NJH did not want me to use the inhaled Amikacin daily ONLY 3 times per week. It is harsh on the throat and vocal cords if used much more. I dilute mine with sodium chloride to make it more tolerable and less side effects. I hope you can tolerate the Amikacin because I hear people have good results.

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I am starting on Amikacin next week. When you dilute Amikacin with sodium chloride, which sodium chloride do you use (0.9 or 7%)? What is the approximate ratio? Thank you.

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1 reply
tconz | @tconz | Oct 28, 2023
In reply to @mimifeels "I am starting on Amikacin next week. When you dilute Amikacin with sodium chloride, which sodium..." + (show)
@mimifeels

I am starting on Amikacin next week. When you dilute Amikacin with sodium chloride, which sodium chloride do you use (0.9 or 7%)? What is the approximate ratio? Thank you.

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I get the 0.9% but I only dilute with 5mL (you can not reuse the rest so dispose of it) per doctors orders. That helps the Amikacin 2mL to not be as harsh on the throat. I am MWF and have not had any issues.

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pattysyarns | @pattysyarns | Nov 29, 2023
In reply to @lilianna "I had Amikacin infusion 3 times weekly for 3 months and there were no problems except..." + (show)
@lilianna

I had Amikacin infusion 3 times weekly for 3 months and there were no problems except very dry mouth and super tiered right after the infusion for about 1-2 hours. I had a PICC line so I would not be poked constantly and it caused problems at the end (rash).

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Hi Lilianna: I just read your post and have some questions about Amikacin IV which my ID and Pulmonologist suggest I do...MAC and bronchiectasis with two cavities. I know you said three times weekly, but was that once a day...and did the side effects go away after a few hours. I currently have no symptoms of any of this and while I want to reduce-eliminate the cavities and have negative sputum, I'm nervous about side effects and having to function at work while on this IV medication. Any suggestions would be most appreciated. Thanks

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3 replies
irene5 Irene Estes | @irene5 | Nov 30, 2023

There is a number I posted a while back for the Assistance Fund. It could cover your Arikayce. It covered mine. I was on Arikayce daily for probably years. If you can’t find the number in a previous post please let me know, and I will repost it. Irene5

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1 reply
irene5 Irene Estes | @irene5 | Nov 30, 2023
In reply to @pattysyarns "Hi Lilianna: I just read your post and have some questions about Amikacin IV which my..." + (show)
@pattysyarns

Hi Lilianna: I just read your post and have some questions about Amikacin IV which my ID and Pulmonologist suggest I do...MAC and bronchiectasis with two cavities. I know you said three times weekly, but was that once a day...and did the side effects go away after a few hours. I currently have no symptoms of any of this and while I want to reduce-eliminate the cavities and have negative sputum, I'm nervous about side effects and having to function at work while on this IV medication. Any suggestions would be most appreciated. Thanks

Jump to this post

I was on the inhaled Arikayce daily for probably two years and had no substantial bothersome side effects . I am retired but probably could have been ok at work while on it. Good luck! Arikayce does its job quite well. Irene5

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1 reply
Rick | @rstel7272 | Nov 30, 2023
In reply to @pattysyarns "Hi Lilianna: I just read your post and have some questions about Amikacin IV which my..." + (show)
@pattysyarns

Hi Lilianna: I just read your post and have some questions about Amikacin IV which my ID and Pulmonologist suggest I do...MAC and bronchiectasis with two cavities. I know you said three times weekly, but was that once a day...and did the side effects go away after a few hours. I currently have no symptoms of any of this and while I want to reduce-eliminate the cavities and have negative sputum, I'm nervous about side effects and having to function at work while on this IV medication. Any suggestions would be most appreciated. Thanks

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I was on Amikacin IV MWF for 12 weeks. In week 5, I got dizziness (could not drive for a few days). Dr cut the dose by 20% and I was able to complete the treatment. I had/have Mac + cavitation.

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1 reply
pattysyarns | @pattysyarns | Nov 30, 2023
In reply to @rstel7272 "I was on Amikacin IV MWF for 12 weeks. In week 5, I got dizziness (could..." + (show)
@rstel7272

I was on Amikacin IV MWF for 12 weeks. In week 5, I got dizziness (could not drive for a few days). Dr cut the dose by 20% and I was able to complete the treatment. I had/have Mac + cavitation.

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Thanks! all of your responses are most helpful.

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liangni1 | @liangni1 | Nov 30, 2023
In reply to @irene5 "I was on the inhaled Arikayce daily for probably two years and had no substantial bothersome..." + (show)
@irene5

I was on the inhaled Arikayce daily for probably two years and had no substantial bothersome side effects . I am retired but probably could have been ok at work while on it. Good luck! Arikayce does its job quite well. Irene5

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I am wondering why you are on Arikayce for two years, because your sputum culture conversion is not 12 months yet? I hope you able complete your course soon.
I started Arikayce 4 months ago and I also had very little side effects. Wish I don’t get positive anymore.
Liangni

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1 reply
irene5 Irene Estes | @irene5 | Nov 30, 2023
In reply to @liangni1 "I am wondering why you are on Arikayce for two years, because your sputum culture conversion..." + (show)
@liangni1

I am wondering why you are on Arikayce for two years, because your sputum culture conversion is not 12 months yet? I hope you able complete your course soon.
I started Arikayce 4 months ago and I also had very little side effects. Wish I don’t get positive anymore.
Liangni

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I am not a coughing kind of gal - dry as a bone - no sputum from me. The only way to find out about a negative culture for me is with a bronchoscopy . After two years it was finally negative for MAC for me.

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