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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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@bamaqueen

Before I was prescribed Arikayce my first ID prescribed Zyvox as one of 3 and the pharmacy wasn’t filling it. I called and asked what the hold up was. It was $900 a month, my insurance didn’t cover. I found a coupon for $120. Ended up having a reaction to Imipenem IV and all meds were stopped first day. Wasted money.
Next ID prescribed Arikayce with iv Tigecycline and Bactrim. Again not being filled. She didn’t know it was a specialty drug and when I looked up the potential cost it was over $16,000 a month!! The IV med $600 ? A month.
I just threw in the towel. How do I find a competent doctor and affordable treatment? I’m a retired RN and thought I knew how to navigate the system. I’ve already had 3 IV lines. First two when they thought I just had pseudomonas. Then a PiCC line for Absessus that I used one day!!!!
Sorry I hijacked your post, but how do we afford this? When I’ve tried for help with Eliquis I am always just enough over in income to disqualify me. Same with Forteo for osteoporosis.

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Replies to "Before I was prescribed Arikayce my first ID prescribed Zyvox as one of 3 and the..."

Oh what a story we hear way too often here on Connect "I just threw in the towel. How do I find a competent doctor and affordable treatment? I’m a retired RN and thought I knew how to navigate the system."

Please do not give up - you need to find a pulmonologist and ID doc who can handle the issue of failed treatment and the aggressiveness of M. Abscessus. Have you considered asking for a referral to a system near you that treats complex cases? Mayo (http://mayocl.in/1mtmR63), UT Tyler, Vanderbilt, National Jewish Health...

When my ID doctor prescribed Arikayce, he sent it directly to the specialty pharmacy or the manufacturer. I’m not sure which. The specialty pharmacy put me in touch with
The Assistance Fund (https://tafcares.org/), a non-profit that helps patients with high out-of-pocket medical costs. In a two-minute phone call, they asked two or three questions. The next day I was notified that they would cover the cost and I would have a copay of $10 per month. I paid the pharmacy $10 for each shipment. My insurance is somehow involved as well, as it appears on my Part D statement. TAF has a specific list of diseases they cover. MAC is on the list. It’s worth looking into.

What insurance do you have?
Harry