Ending antibiotics for MAC

Posted by lilianna @lilianna, Oct 27 7:35am

How is it with the length of period for taking MAC antibiotics? The protocol calls for 12 months after converting to negative for mac and staying negative throughout the 12 months after converting. Is staying longer better? If you stopped taking antibiotics how did you do it- gradually or just stopped all?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

rbl | @rbl | Oct 28 7:53am

I stayed on meds 12 months after conversion, 18 months in all. I was given a specific date to quit all meds all at the same time, best feeling ever. Then I concentrated on getting my stomach happy again. After a couple months it’s back on track! Congrats and good luck!

cattleya | @cattleya | Oct 28 6:59pm

In reply to @rbl "I stayed on meds 12 months after conversion, 18 months in all. I was given a..." + (show)

That's wonderful! Have you been dealing with M.Abscessus (MABC) or only MAC?

rbl | @rbl | Oct 28 9:53pm

In reply to @cattleya "That's wonderful! Have you been dealing with M.Abscessus (MABC) or only MAC?" + (show)

I had MAC

suzyqueue | @suzyqueue | Oct 29 7:32am

Since MAC is so complicated to treat and has the probability of returning, I believe the extra time on meds after conversion is for "insurance" to keep it at bay longer. I have never converted and have been on all the meds for 6 years. They have kept me stable and the cavity that started at 10 cm has shrunk and has stayed at 5 cm.

tconz | @tconz | Oct 29 7:39am

I was on the Big 3 for 13 months (with MAC) testing negative the whole time. After being off meds for only 5 months (which was glorious) I got Aspergillus and Abscessus (which was found during a Bronchoscopy). I was beyond disappointed but they wanted to treat the Aspergillus first and I am into 3 months of a 6 month treatment with Voriconazole. I go back to NJH Nov. 3rd so not sure what they plan to do at this point. I try to stay positive but it does get hard at times.

healthme | @healthme | Oct 29 2:46pm

In reply to @suzyqueue "Since MAC is so complicated to treat and has the probability of returning, I believe the..." + (show)

i am glad to find someone who stayed on meds for keeping Mac under control. if you don't mind sharing meds info? I am new to these chat boards. My spouse has MAC for about 14 yrs! He's been on sev. antibiotics almost as long. Also on a probiotic same amount of time. He also has COPD. any info/research or experiences will be appreciated! Bless you all

suzyqueue | @suzyqueue | Oct 29 4:08pm

In reply to @healthme "i am glad to find someone who stayed on meds for keeping Mac under control. if..." + (show)

Of course. I'm on Azithromycin, Ethambutol, Rifabutin, Clofazimine, inhaled Arikayce, 2 breathing treatments per day consistent of Levalbuterol and 3% saline solution.

lilianna | @lilianna | Oct 29 6:53pm

In reply to @suzyqueue "Since MAC is so complicated to treat and has the probability of returning, I believe the..." + (show)

Oh my. How did you survive six years of antibiotics? And what do you mean “on all the meds” because I can’t imagine even taking them for such a long time. You must be a very strong person. God bless you.

suzyqueue | @suzyqueue | Oct 29 7:22pm

In reply to @lilianna "Oh my. How did you survive six years of antibiotics? And what do you mean “on..." + (show)

I've been fortunate to have tolerated all these meds. I've had some digestive issues but adding Imodium to the plan it helped.

healthme | @healthme | Oct 29 9:25pm

In reply to @suzyqueue "Of course. I'm on Azithromycin, Ethambutol, Rifabutin, Clofazimine, inhaled Arikayce, 2 breathing treatments per day consistent..." + (show)

Thank you for sharing your regimen. He takes the A , C & E
He won't/can't take the breathing treatments, they always make him sicker & gets hospitalized 😞 he/ we can't see how adding more fluid to your longs is a good thing. He has tried them for yrs. He had gone to NJH in Denver for 8+ yrs twice a yr. This year he skipped. He felt like it wasn't helping him much at all. Same tests/ routines. God bless you . Feel free to reach out or share any new meds or discoveries