Arikayce in combination with antibiotics for MAC treatment

Posted by diane36 @diane36, Aug 3 9:00am

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.

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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