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Should I take Big 3 + inhaled ARIKAYCE

MAC & Bronchiectasis | Last Active: 3 days ago | Replies (104)

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@bamaqueen

Thank you, I did see that as a possibility. My ID unfortunately had no clue about what she was ordering. She ordered it from my regular pharmacy and was shocked at the cost. I’ve been put on the “back burner” while she investigates, plus my mother had just died when this all came about. I’m just trying to decide on my next step, another ID or what. This is year 3 of trying to diagnose and treat. Initial diagnosis was allergies and acid reflux after seeing 4 specialist! Next year switched doctors and actually had a culture. Pseudomonas. Over a year of treating and not treating until last September when I begged my doctor to admit me and figure this out. End of December finally got the Mycobacterium Absessus diagnosis.
On my second ID because the first one prescribed Amikacin IV twice a day after an allergic reaction to Imipenem. The kicker was I had to go to the hospital for the infusions and lab work. Who can do that twice a day for months? That is when i asked my PC to find me a new specialist. Liked her a lot, but obviously not a Mycobacterium specialist.
I know MAC doesn’t typically require IV meds, but Absessus does from my extensive reading.
All my other meds for pseudomonas were home infusions.
Sorry to ramble. Hoping someone who has any insight will chime in. Thanks again.

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Replies to "Thank you, I did see that as a possibility. My ID unfortunately had no clue about..."

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.