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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pattysyarns | @pattysyarns | Dec 11, 2023

Thanks for your thoughtful and detailed response

ritapearl | @ritapearl | Feb 20 7:55pm

In reply to @irene5 "Yes my doctor took me off Arikayce and all MAC meds. irene5" + (show)

Your posts are uplifting and making us hopeful.I am writing for my wife Rita. She has had Be and MAC for 6 years. She started Arikayce plus etahbutol and Azithromyacin 3X a week Jan 2024. We are both retired teachers like you.
PS only 3 kids and 8 Grands(you guys are amazing)Richie and Rita Singer

irene5 Irene Estes | @irene5 | Feb 21 9:27am

In reply to @ritapearl "Your posts are uplifting and making us hopeful.I am writing for my wife Rita. She has..." + (show)

Arikayce will most likely cure your wife especially since she is on the other two meds as well. Thank you for your kind comments. I only gave birth to 4 - we bought the other 6. :). The 15 grandbabies are an added bonus. We are truly blessed and rich in children. God is good all the time! Blessings, Irene Estes

ncalvan | @ncalvan | Feb 22 6:17am

I have been taking the big three antibiotics for two years. When I didn’t convert to negative the dr added arikayce. I took it 6 months and converted. Have continued taking it for 1 year after converting. I finish in June. I’ve had no side effects. The sore throat goes away after the first several doses. I take it religiously with my antibiotics and believe it’s the reason I cleared the MAC. I worry when I finish the regime that I will reinfect but that’s MAC

Sue, Volunteer Mentor | @sueinmn | Feb 22 6:02pm

In reply to @ncalvan "I have been taking the big three antibiotics for two years. When I didn’t convert to..." + (show)

Are you using 7% saline nebs? I cannot recommend them strongly enough to keep MAC away! 4+ years without reinfection. Others here tell similar stories.
Sue

ncalvan | @ncalvan | Feb 23 6:12am

In reply to @sueinmn "Are you using 7% saline nebs? I cannot recommend them strongly enough to keep MAC away!..." + (show)

Yes! I wear an Afflo vest and nebulize 7% daily. I don’t get up the mucous though. Wish I could. Any tips?

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