← Return to Has anyone reverted to positive while on the “Big 3”?

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@laureltn

Hi, Trace! I had a similar experience. I treated MAC from January 2020 converted quickly, stayed negative, and was off the Big 3 in 15 months. Unfortunately, after only about six months, I tested positive again for MAC. We waited to treat until January of 2022 because I have never had physical symptoms, am extremely physically active, etc., but after my December 2021 CT showed progression, we decided to start medication again.

I started January of 2022 and converted in March 2022. After 3 negatives, MAC returned in June and basically never left. I had a couple negatives after that, but never two back to back. After 16 months of the Big 3 and still positive, we started Arikayce and dropped the Rifampin. I got a negative June 2023 and have been negative every month since. I'll be finished with my treatment in about four months.

We'll never know for sure whether this was the same strain that somehow managed to come back after successful treatment or a new one, but it appeared to develop resistance fairly quickly into treatment in 2022, even though the cultures and sensitivities indicated it would respond to the Big 3 in initially. I've always done airway clearance and avoidance, and we added a Monarch vest in November of 2021 to see if that would help eradicate it. I still use it daily.

Having been on treatment for most of the last four years since my MAC was first discovered, basically, I am hopeful that this time to stay clear for a long time. Best of luck! I know how frustrating the positive/negative "hokey pokey" can be!!!

Laurel

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Replies to "Hi, Trace! I had a similar experience. I treated MAC from January 2020 converted quickly, stayed..."

I’m sorry. This a lesson in patience, is it not? I used Arikayce the first go round. It converted me to negative right away. I had no issues with using it, although I’ve read many people have had side effects.
Glad to see you are close to the rend of treatment!! That’s wonderful! Fingers crossed for it being a long-term success!!