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.

diane36 There is something called the “NTM Mycobacterial Lung Disease Copay Assistance Program” which provides financial assistance to cover all or part of the out of pocket cost for the medication. It is part of the Arikayce program. After Medicare that covers me. As far as the side effects, the most common are voice issues and cough. I hope this information helps. irene5

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Thank you, Irene. I am in contact with both my insurance company and doctor's office and will follow up with the assistance program you referenced. I am glad to hear that side effects have not been severe.

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@diane36

Thank you, Irene. I am in contact with both my insurance company and doctor's office and will follow up with the assistance program you referenced. I am glad to hear that side effects have not been severe.

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@diane36 If you experience side effects that are problematic for you, you can take a few days off and then restart. Aricares ( the support team) sends you a journal to write down everything you experience and then some. irene5

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I received and reviewed the journal but waiting on prior authorization by pulmonologist to complete prescription process. In the meantime, I will be starting the Big 3 cocktail again.

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@diane36

I received and reviewed the journal but waiting on prior authorization by pulmonologist to complete prescription process. In the meantime, I will be starting the Big 3 cocktail again.

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@diane36 If you had issues with any of the Big 3 in the past, please know you only have to be able to tolerate two of them. Rifampin seems to be the one in question. irene5

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It's been two years since I was able to go off the Big 3, and I didn't have serious side effects, but I also remember Rifampin being most troublesome.

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@diane36

It's been two years since I was able to go off the Big 3, and I didn't have serious side effects, but I also remember Rifampin being most troublesome.

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@diane36, Hi Diane. Have you ever been prescribed 7% sodium chloride (nebulized saline)? It really helps to keep the bacteria count down and it thins the mucous so that it comes up easier. The use of the saline has helped many members on this forum.

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No, I haven't although I've read reports of other members. Not sure why pulmonologist has never prescribed for me. He strongly believes in Arikayce for me in that latest sputum sample (June) reflected return of MAC. So, now, at his recommendation, I'm back on the big 3 again.

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After being on two antibiotics for 15 months 8 years ago, my recent bronch culture showed recurrence of MAC. I am being encouraged by my pulmonologist to use AriKayce inhalations along with Azithromycin for at least 12 months. I'm very reluctant since I have bronchiectasis I feel sure the MAC will recur at some point and, meanwhile, I have chronic kidney disease and am afraid these drugs will damage my kidneys.

I am seeking a second opinion from an Infectious Disease MD who is also trained in Nephrology. I am on Medicare, but don't have Plan C ( it was not available when I signed up for Medicare and now the penalty added to the monthly premium makes signing on prohibitive). Without drug insurance, the cost of AriKayce is out of reach for me.

I'm 79 years old and would like to know if/how anyone is doing okay without taking this drug regimen. Side effects are worrisome and seems like recurrence is likely anyway.

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@lupine

After being on two antibiotics for 15 months 8 years ago, my recent bronch culture showed recurrence of MAC. I am being encouraged by my pulmonologist to use AriKayce inhalations along with Azithromycin for at least 12 months. I'm very reluctant since I have bronchiectasis I feel sure the MAC will recur at some point and, meanwhile, I have chronic kidney disease and am afraid these drugs will damage my kidneys.

I am seeking a second opinion from an Infectious Disease MD who is also trained in Nephrology. I am on Medicare, but don't have Plan C ( it was not available when I signed up for Medicare and now the penalty added to the monthly premium makes signing on prohibitive). Without drug insurance, the cost of AriKayce is out of reach for me.

I'm 79 years old and would like to know if/how anyone is doing okay without taking this drug regimen. Side effects are worrisome and seems like recurrence is likely anyway.

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I just started Arikayce in addition to the daily Big 3, after being on just the Big 3 Mon/Wed/Fri for 10 months. So far, no side effects, but it's still early days. In terms of cost, they have the Arikares financial aid program that provides a 'coupon' for the meds. The coupon, plus my insurance, has resulted in zero out-of-pocket cost for me.

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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!

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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

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