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Mycobacterium abscessus and ARIKAYCE
I was recently diagnosed with mycobacterium abscessus with the erm41 gene. Because of that gene the antibiotics (and other ones) I used when I had MAC 3 years ago will not work on this. I am soo going to be on ARIKAYCE. has anyone been treated with this drug for a similar diagnosis?
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I am currently finishing Arikayce treatment day 28. I have M. abssessus but additionally later MAC +. Did not begin the Arikayce until I failed linezolid and tedizolid. The Arikayce was specifically for M. abssessus but I was also told (I think) to treat MAC as well. So, a little bit different than your situation.
I also have abscessus with erm41 gene, was MAC before. I was on everyday Arikayce for 10 months the culture became negative at last 2 months treatment, I stopped Arikayce for about 2 months due a big drop of PFT, my sputum turned to positive right after I stopped arikayce. now I am on 3x/week Arikayce for 3 months, still culture positive. I think 3x/week is not enough but I couldn’t tolerate it for everyday. The abscessus is very stubborn.
Thank you
Sounds like I am in for a battle with this. Are you suffering any of the side affects with the drug?
Were you on IV Arikayce and if so did you have trouble with hearing loss? I seem to hear that a lot. It seems many people are also on clofazimine?
I go into the hospital Monday and start the IV treatment for a week so can monitor me. I will let you know.
The fight is hard. My husband fought for 7 year's until the Mac disease took completely over. I lost him this February. It's a terrible disease. Praying for you.
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1 ReactionYes, I was on IV Amikacin, lost a little bit hearing so doctor switched me for Arikayce.
Wishing you the best of luck with the IV Arikayce.
Does everyone have to go in hospital for iv fusion
No I did at home for 2 months Amikacin and Imipenem