Arikayce in combination with antibiotics for MAC treatment

Posted by diane36 @diane36, Aug 3, 2020

I am being encouraged to use Arikayce, along with the Big 3 antibiotics, for treatment of recurrence of MAC. I had been off the antibiotics for two years. I am concerned about the "serious and common" side effects of Arikayce that I read about on the Arikayce site + this nebulized medicine is very expensive. Have received estimate from insurance company that even though it is covered in my plan, monthly cost to me would be around $450.

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

My doc at NJH says it's time to begin treatment with Azithromycin, Ethambutol, Rifampin, and inhaled Arikayce. I'm looking for wisdom from those who have been successfully treated with these meds… supplemental vitamins? time of day meds taken? easing side effects? thoughts on need for Rifampin, or not? etc. If you've taken this drug treatment and been lucky enough to culture negative for MAC, please share any tips you have! Thank you!

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@aerogirl

My doc at NJH says it's time to begin treatment with Azithromycin, Ethambutol, Rifampin, and inhaled Arikayce. I'm looking for wisdom from those who have been successfully treated with these meds… supplemental vitamins? time of day meds taken? easing side effects? thoughts on need for Rifampin, or not? etc. If you've taken this drug treatment and been lucky enough to culture negative for MAC, please share any tips you have! Thank you!

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@aerogirl – This is one of the most discussed topics in the group!
Let me point you to some recent discussions where people can provide tips for managing the antibiotics.

Using Arikayce with the "Big 3":
https://connect.mayoclinic.org/discussion/arikayce-in-combination-with-antibiotics-for-mac-treatment/
What monitoring is needed:
https://connect.mayoclinic.org/discussion/monitoring-with-the-big-3/
When to take:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
Here are some hints for getting better response –
Click on just the MAC & Bronchiectasis group here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

This takes you to a list of all discussions, but more importantly, there is a "search box" that only looks for your topic within this group instead of all of Connect. Type in your key words and a list pops us.

Next tip – the larger the comment number at the end of a link, the newer the comment.

If a discussion seems "old" but has multiple pages, jump to the newest posts by clicking below the initial post & choose "Newest to Oldest" – you will see the more recent discussion.

Final tip – When you find a helpful tip, and would like more info, use the "Reply" button at the end of that comment respond. The person who sent it will be notified in their daily digest that someone has responded.

I hope all of this helps you to "Connect" with others like us – we have awesome members who can answer so many of your questions.
Sue

REPLY
@sueinmn

@aerogirl – This is one of the most discussed topics in the group!
Let me point you to some recent discussions where people can provide tips for managing the antibiotics.

Using Arikayce with the "Big 3":
https://connect.mayoclinic.org/discussion/arikayce-in-combination-with-antibiotics-for-mac-treatment/
What monitoring is needed:
https://connect.mayoclinic.org/discussion/monitoring-with-the-big-3/
When to take:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
Here are some hints for getting better response –
Click on just the MAC & Bronchiectasis group here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

This takes you to a list of all discussions, but more importantly, there is a "search box" that only looks for your topic within this group instead of all of Connect. Type in your key words and a list pops us.

Next tip – the larger the comment number at the end of a link, the newer the comment.

If a discussion seems "old" but has multiple pages, jump to the newest posts by clicking below the initial post & choose "Newest to Oldest" – you will see the more recent discussion.

Final tip – When you find a helpful tip, and would like more info, use the "Reply" button at the end of that comment respond. The person who sent it will be notified in their daily digest that someone has responded.

I hope all of this helps you to "Connect" with others like us – we have awesome members who can answer so many of your questions.
Sue

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Thank you so much! I already used one of your tips… and it was in reply to a comment from you! 🙂

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