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Should I take Big 3 + inhaled ARIKAYCE

MAC & Bronchiectasis | Last Active: Aug 5 8:40am | Replies (144)
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@robinzemp

I also have M. Abscessus. ID doctor says it’s more difficult to treat than MAC and is faster growing. I started with Arikayce, Azithromax, and Omadacycline last October. All of my cultures since then have been negative. I think Arikayce helped, but I ended up in the hospital the second month. They thought Arikayce was responsible so they took me off. In its place I’m taking IV cifoxican. I know the problems you’re talking about. Dosage is twice a day. I do those myself at home, but I have to have a nurse each week for blood draw and dressing change. Medication comes from a specialty pharmacy, but they have to sub contract nursing and they charge me for supplies as they cannot bill Medicare for them. Finally arranged for the ID doctor’s infusion clinic to do the weekly visit, but I have to go there, Not bad since Medicare covers and it is only once per week. The supply charge was $120 per day! Pharmacy finally got me a program that pays 70%. You just have to keep asking and pushing.

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Replies to "I also have M. Abscessus. ID doctor says it’s more difficult to treat than MAC and..."
bamaqueen | @bamaqueen | Jun 12 11:38am

Thank you for your reply. I've done home infusions 3 separate times with a nurse coming in once a week. I'm still under home health care, but just every two weeks right now since I'm not having any treatment. Fortunately my insurance covers that.
My dilemma is finding a doctor that knows what to do. My second ID doctor said I was lucky the first one didn't kill me!! He's the "best" and only one locally, lots of great reviews. Second is the one that didn't know Arikayce is a specialty drug and ordered it from my grocery store pharmacy!
I don't know why the first doctor that ordered Amikacin IV required me to go the a hospital 25 miles away (not the one by my house) twice a day for infusions and labs during infusions. I don't see anyone else dealing with that kind of stuff. This was the second treatment after reacting badly to Imipenum IV.
Just very frustrating.
How do people manage to go to Mayo 400 miles away for treatment?
I'd pull my hair out, but it's falling out too much already!!!

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