Should I take Big 3 + inhaled ARIKAYCE

How can anyone afford Arikayce reading one post that is on Medicare which is what I'd be on was 6000.00 a month!

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.

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.

Kampo medicine case , extracted from above article: Hence, a bukuryoshigyakuto (Panax ginseng 1g, Aconiti tuber 1g, Glycyrrhizae radix 2g, Poria cocos 5g and Zingiber siccatum 2g) decoction (to infuse a total of 11 g of each herb with 400 ml of water for 30–40 min to make 200 ml, and to take in two divided doses) was started after a medical examination based on Kampo principles, while discontinuing the current treatment with clarithromycin, rifampicin and ethambutol. Within a few months, her eyesight improved, her gait disturbance also improved, and she no longer needed to use a wheelchair. Her appetite returned, and her hemoptysis and sputum gradually decreased. During the course of her treatment, she stopped taking bukuryoshigyakuto for a while due to the complexity of the decoction. She again recognized an increase in the hemoptysis and restarted the medication, and since then has never stopped it. Her HRCT image findings also improved. Although the middle lobe and lingular segment bronchiectasis showed no changes, bilateral centrilobular lesions and dorsal predominant bronchiolitis improved significantly (Figure 1B). Her body weight increased from 30 to 42 kg within 3 years after starting bukuryoshigyakuto. Her laboratory data also improved, to a neutrophil count of 2,880 /μl, lymphocytes of 1,063 /μl, albumin level of 3.9 g/dl and hemoglobin level of 11.4 g/dl (Table 1). Her shortness of breath, hemoptysis and sputum also finally improved, although she had some residual cough and slight numbness in her legs. Currently, continuing outpatient visits and bukuryoshigyakuto therapy have maintained her AFB smear and culture negative status

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.

What insurance do you have?
Harry

Never mind.

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!!!

What was your reaction to Imipenum if you do not mind my asking?