Arikayce

I agree with you. After 6 months on Azithromycin and Ethambutol, I was reduced to a few stubborn colonies on culture with a negative smear. My doctor added Arikayce after the 6 month mark, and in less than 1 month, I cultured negative. So far negative for 5 months with no negative drug side effects.

At the time, rules were that you had to have been on standard treatment for 6 months before adding Arikayce. That has changed or will change to allowing Arikayce as a first line treatment along with the standard regimin (not alone). Then it is 18 months after sputum conversion.

The change in the rules will allow for earlier sputum conversion, so if you are offered the opportunity to add Arikayce and can tolerate it (I do 3 times weekly, and doctors will work with you on the frequency. It does not have to be every day), then try it.

This is a stubborn and resilient bug. Rest, good diet, and added supplements will help you fight it and withstand the treatment, but those measures are simply no match. The other necessary treatment is twice daily nebulizing with hypertonic saline (7% is best) along with an Aerobika or other device to help bring up the mucus. Many people have been able to keep from going on meds and keeping their numbers almost undetectable by simply doing daily, rigorous airway clearance and properly disinfecting equipment after each use.

The way I see it is that this bug damages the lungs, and the sooner it is eliminated, the less likely damage will continue. Then airway hygiene twice daily with sterilizing equipment and other measures to avoid or reduce reinfection is a proactive and easy way to keep healthy. Don’t be afraid of the meds. Many people have no problems with them. Those who experience some issues can work with their doctors to find meds they can tolerate. If you don’t have cavities, you will do a three day a week regimin. The earlier you treat, the less likely you are to develop cavities.

Don’t let treatment fear paralyze you. Be as proactive as you can be, under your individual circumstances. Get to a center of excellence or find a good team of doctors who will work with you, and do what is needed to eliminate this bug.

Before I began treatment, I felt that it was pointless to treat, if it was just going to end in later reinfection. Then I read so many accounts of people who, by continuing airway clearance, sterilizing equipment, and being sensibly cautious about re exposure, have been able to remain sputum and culture negative.

Don’t let fear rule your decision. Reach out for encouragement.

I started on it every day for the first 2 or so years. Now I do 3 times a week.
I started with the side effects that everyone seems to start with but they eventually subsided. I found doing the treatment before bed and gargling with the warmest water possible afterwards helped with resting vocal chords through the night. I still cough a bit through the treatment but it has its advantages in helping to clear lungs too.

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.

I don’t understand the concern about wasting medication if you are taking less frequently, as you can keep it refrigerated and just delay the next delivery
I mostly took it daily but had a few times when I needed to reduce for side effects or travel

Yes I am in exactly the same spot. I have been on Arikayce for only a month and my cough is worse. That plus the big three anti biotics have me feeling so badly I am about to suggest to Docs that I can’t go on. I am almost 86 —- is it worth it all at this point in my life??? Good luck.

My cost was $6000 per month 2 years ago. Did they double the price?

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.