1. < MAC & Bronchiectasis

Arikayce vs Amikacin

Posted by marmee26 @marmee26, Sep 16 8:43am

Hi All, I’m fairly new to this group and appreciate any insight offered. I also recognize that everyone responds to therapy differently. That being said, my co-pay for Arikayce is very steep. The prescribing physician has offered Amikacin in lieu of Arikayce. I am aware that these two vary in how the body processes them. Question- has anyone in this group recovered fully from MAC on Amikacin? Any insight is appreciated. Thank you in advance.

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Mary | @mjb24 | Sep 19 9:00pm
In reply to @frankie160 "Mary@mjb24, Yes, it would be interesting to check back and make certain how the Arikayce was..." + (show)
@frankie160

Mary@mjb24,
Yes, it would be interesting to check back and make certain how the Arikayce was paid for when time permits. I was nebing Arikayce 7 days a week since July, 2023. I have been taken off Arikayce last March,2024 even though the best practice suggested to continue with Arikayce for 1 year from your first negative sputum for MAC. Both the ID Doc and Pulm agreed that Arikayce outlived its usefulness in my case based on some severe symptoms (see below) that started in December, 2023 and almost immediately disappeared 5 days after stopping the Arikayce.
Hope all will be smoother for you as you continue on your journey.
Onward,
Flo@Frankie160
PS
My severe symptoms were constant serious voice and throat issues from the beginning with crazy non stop coughing, and acute shortness of breath.

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I'm sorry to hear you had to stop the Arikayce. This MAC is a definite battle with lots of curve balls! I wish you the best!!

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mariegrace | @mariegrace | Sep 20 8:47am
In reply to @mjb24 "Thanks Rick. That's a great idea. I do have an Arikares coordinator since I am on..." + (show)
@mjb24

Thanks Rick. That's a great idea. I do have an Arikares coordinator since I am on Arikayce and they are covering the $200 copay. I will give her a call to see if she can provide more info on what is available when someone is on Medicare.

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Hi all,
I saw my pulmonologist yesterday. She did mention that they are working on amikacin for nebulizer. I only tolerated 7 weeks of ethambutol+azithromycin MWF so proposed taking eth 800mg + azith 250mg every 2 days to see if I tolerate. I ran it by ID and he said doses too low and the mycobacteria would become resistant. I dont want to wait until I get worse. My feeling its better then nothing. Because I had side effects concerned about sustainability of the protocol.
Arikayce can cause loss of voice after even 7 days.....scary.
I am relying on all airway clearance techniques to get rid of stuff in my lungs for now.
Good luck!!

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Mary | @mjb24 | Sep 20 5:58pm

Sounds like your determined to beat this and willing to do whatever you can. That's great! I believe strongly that a positive attitude and determination are crucial elements in any of life's challenges. I will remember you in my prayers.

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1 reply
mariegrace | @mariegrace | Sep 20 8:30pm
In reply to @mjb24 "Sounds like your determined to beat this and willing to do whatever you can. That's great!..." + (show)
@mjb24

Sounds like your determined to beat this and willing to do whatever you can. That's great! I believe strongly that a positive attitude and determination are crucial elements in any of life's challenges. I will remember you in my prayers.

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Thank you Mary
God bless you
Marie

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pacathy | @pacathy | Sep 23 7:58am

I strongly encourage you to speak with company about assistance they can provide with Medicare. In my last role as a nurse (several years ago), we helped people who were frequently admitted to the hospital or ER. Some were on multiple meds with financial constraints and we helped them wade thru the needlessly complex patient assistance programs-all different. We had a great success rate, even when patients were a bit over the income limits, especially if the patient had numerous meds that reduced income. It is not good PR for the company to deny sick patients.

If you have the energy, I also encourage you to contact your senators and representatives since they need to hear about the difficulties people have both affording and navigating the current system, sometimes when they are quite ill.

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robinzemp | @robinzemp | Sep 24 11:57am

My Medicare Part D approved ARAKAYCE with a copay of $77.00 (standard tier 3 copay). The specialty pharmacy then connected me with The Assistance Fund. They approved me immediately, and I paid $10.00/month. Be sure your doctor knows where to send the Rx. My ID doctor seemed very knowledgeable about it. My pulmonologist, on the other hand, has had repeated denials for a medication he is trying to prescribe for me.

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2 replies
marmee26 | @marmee26 | Sep 24 1:46pm
In reply to @robinzemp "My Medicare Part D approved ARAKAYCE with a copay of $77.00 (standard tier 3 copay). The..." + (show)
@robinzemp

My Medicare Part D approved ARAKAYCE with a copay of $77.00 (standard tier 3 copay). The specialty pharmacy then connected me with The Assistance Fund. They approved me immediately, and I paid $10.00/month. Be sure your doctor knows where to send the Rx. My ID doctor seemed very knowledgeable about it. My pulmonologist, on the other hand, has had repeated denials for a medication he is trying to prescribe for me.

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Hi Robin (@robinzemp),
Thank you for this information. I contacted my insurance provider (Part D) and was told the difference in copay is because of the difference in Tier. Aetna
( my provider) considers Arikayce a Tier 4 drug. I am curious as which drug providers put Arikayce as a Tier 3. Please feel free to private message me if you have any additional information to share. Thanks so much.

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1 reply
Rick | @rstel7272 | Sep 25 7:43am
In reply to @marmee26 "Hi Robin (@robinzemp), Thank you for this information. I contacted my insurance provider (Part D) and..." + (show)
@marmee26

Hi Robin (@robinzemp),
Thank you for this information. I contacted my insurance provider (Part D) and was told the difference in copay is because of the difference in Tier. Aetna
( my provider) considers Arikayce a Tier 4 drug. I am curious as which drug providers put Arikayce as a Tier 3. Please feel free to private message me if you have any additional information to share. Thanks so much.

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It should not be so difficult to find what D plan covers which pharmaceuticals and at what price. At age 66, I love Medicare but
part D has been very bad. I even got the best AARP plan available

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harrynsc | @harrynsc | Sep 25 12:02pm
In reply to @robinzemp "My Medicare Part D approved ARAKAYCE with a copay of $77.00 (standard tier 3 copay). The..." + (show)
@robinzemp

My Medicare Part D approved ARAKAYCE with a copay of $77.00 (standard tier 3 copay). The specialty pharmacy then connected me with The Assistance Fund. They approved me immediately, and I paid $10.00/month. Be sure your doctor knows where to send the Rx. My ID doctor seemed very knowledgeable about it. My pulmonologist, on the other hand, has had repeated denials for a medication he is trying to prescribe for me.

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Robin,
Which Part D plan do you have?
Thanks,
Harry

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