I recently finished a successful 13 month course of treatment on Arikayce. I added Arikayce to my regimen as my case was considered refractory. The guidelines define 'refractory' as non-conversion of sputum after 6 months of treatment on the Big 3. After almost one year on the Big 3 (M/W/F) with no sputum conversion, my NJH physician recommend going on the Big 3 daily and adding Arikayce.

Arikayce is not recommended as a monotherapy, meaning it needs to be taken along with the Big 3. Also, the medicine comes in a pack containing 28 vials. 7 vials for each day of the week (there are 4 boxes, one for each week of the month, marked 1 through 4). So the medication is intended to be taken on a daily basis. This medication can only be ordered and delivered through one of only 2 specialty pharmacies in the US. The monthly cost is approximately $13,000, so each vial contains about $500 worth of medication. So if you're only taking the medication 3 days a week (i.e. not per formal guidelines), you are essentially trashing almost $8,000 worth of medication per month.

I had zero side effects from any of the meds and converted to negative in the first month of treatment, remaining negative for the subsequent 12. Per my NJH physician and NTM treatment guidelines, the recommendation is to continue on the treatment for 12 months post initial negative sputum. You have to maintain your negative status for the subsequent 12 months. So best case, you will have to be on the meds for 13 months.