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Arikayce in combination with antibiotics for MAC treatment
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.
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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!
@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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1 ReactionThank you so much! I already used one of your tips... and it was in reply to a comment from you! 🙂
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1 ReactionWHAT SHOULD WE EXPECT WHEN STARTING ARIKYACE??
Sue, our Mentor and other members ,
Hi there and to others who have had experience with Arikayce. My Pulm Doc has recommended I start Arikayce and was approved for the Assistance program as well. I will be nebbing the Arikayce along with the Big 3 . But before starting, I'm doing research and checking in with our group members, who in my mind are most knowledgeable and very sharp about these matters. I've been very fortunate to find this group.
My main question right now is what side effects or adverse symptoms have you experienced (mild and/or strong) using Arikayce over time? And how have you and your doc been able to mitigate the side effects?
Thank you in advance for any thoughts at all.
Flo@frankie160
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1 ReactionI started out OK, then started coughing more and more. Had to stop at 4 1/2 months since I could not complete the 14 minutes anymore (10-12 at best). At that time, nobody would recommend a reduce schedule, everyday was too much for me. I had some minor tinnitus.
Hi Flo - I never used Arikayce, so we'll need to wait to hear what our other members experienced and learn together.
Sue
Thank you, Sue! I suspected that was the case.
Can't thank you enough for monitoring our group the way you do.....with all your tips and common sense about
our conditions.
Take care,
Flo@franiie160
@extracare808 ,
I'm about to start Arikayce in July, 2023 and was wondering how you did or are doing on this drug. Did you share that you were nebbing Arikayce daily and taking the Big 3 daily or 3 times p/w since August, 2022?
I was diagnosed with MAC in June, 2022 and started the Big Three 3 x p/w in September of 2022. As of May 2023, MAC is still lurking in my lungs. My Pulmn Doc suggested I consider inhaling Arikayce along with the Big 3 (which I tolerated very well) and expect to start in July, 2023.
Please let us know how you made out? Any thoughts on this would be most appreciated.
Thanks,
Flo @frankie160
I’ve been on arikayce plus the oral antibiotics at two different times. The first time was pretty difficult with lots of nausea that eventually passed. I was on this regimen for 2 years abs then was MAC free for about 18 months. I’m currently on the regimen and have fewer issues.