1. < MAC & Bronchiectasis

Anyone taken the Big 3 on every other day dosing schedule?

Posted by rescuemum @rescuemum, Jun 10 2:46pm

My ID Dr is thinking about skipping a day between antibotics since they stay in the system 24 hrs or more to make treatment a little easier on me perhaps…has anyone done this w success? I nebulize Albuterol & 3% Sodium Choride sol 2x’s day along w a Smart Vest ACT….thank you in advance for any guidance…need to make decision to start treatment or not… I have bronchiectasis (nodular) & MAC but seem to be holding my own symptom wise & CT scans show waxing & waning every 3 mos….

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rescuemum | @rescuemum | Jun 12 7:03pm
In reply to @mruskin "Same however I did drop rifampin early on and protocol was still successful in clearing the..." + (show)
@mruskin

Same however I did drop rifampin early on and protocol was still successful in clearing the MAC

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Thank you for sharing your personal experience & congrats on testing negative!! It is encouraging that yourself and others were cleared with the use of two antibotics!! Bravo!!

REPLY
rescuemum | @rescuemum | Jun 13 7:07am
In reply to @rbl "I don’t want to influence or discourage you in any way, your docs will advise you..." + (show)
@rbl

I don’t want to influence or discourage you in any way, your docs will advise you and doing your research is a good idea. I didn’t have this forum when I began or options 20 months ago. I started off with the wrong docs for me and my treatment was a bit messed up. I also have dyssutonomia so my body reacts differently to things. I originally started on daily treatment azithromycin, ethambutol, rifabitin, started 2 weeks apart. I got horrible flu like symptoms from rifabutin. After attempting it 2 times with same reaction, I was switched to levafloxacin, then went off that after 4 months due to tingly toes and achy joints. After 2 months of daily meds I went to 3 times a week. I had 7 sputum tests during that time and all were negative until my last one. I was only on azithromycin and ethambutol the last 8 months. My current doc wants 2 more sputum samples and we are waiting to see if I have symptoms the next 3 months. In hindsight, I regained weight plus extra, cough went away, and no more night sweats so I’m not upset I went on meds, just hoping I had a false positive. I just stopped meds one week before I got the news, I’m just trying to get my stomach healthy again and enjoy no meds as long as I’m able. I’m doing airway clearance and trying to eat well. My recent CT showed no change from 8 months ago so that’s good. One suggestion if you go on meds is to get hearing and eye eval first, I have a bit hearing loss and tinnitus but not sure if it was before meds since my hearing eval was 8 months after meds started. Good luck and hopefully you’ll be fine no matter what you choose.

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Thanks so much for sharing your journey & prayers for a “false positive”!! My ID Dr did order a eye, hearing & EKG as well prior to starting treatment for baseline on eyes & ears but I also have AFib which I take a Beta Blocker ( Carvedilol) for controlling heart rate. I’ve been told that the meds for AFib don’t play well w the antibiotics used for MAC…so that’s an added concern. Please keep us abreast of any updates…best of luck & thanks again!!

REPLY
rescuemum | @rescuemum | Jun 13 7:12am
In reply to @sissir10 "Watch out for the rifampin. It caused big time trouble for me. If your ID doctor..." + (show)
@sissir10

Watch out for the rifampin. It caused big time trouble for me. If your ID doctor could, have him give you something else. Mean while, when I was on them, I learned to sip lemon ginger tea and eat crackers to calm my system.

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Thanks for the heads up on the Rifampin…it sure seems to be the culprit of trouble for many patients! I will discuss w the ID Dr about possible other antibiotics as possible options…nervous about my decision but going to follow my heart about treatment…take care of yourself & thanks for for input!

REPLY
irenea8 | @irenea8 | Jun 13 9:57am
In reply to @positivethinking "Thanks for the info. I’m also not a large person and the one dose that I..." + (show)
@positivethinking

Thanks for the info. I’m also not a large person and the one dose that I had was 1200 of the ethambutol, 500mg of azithromycin, and 600 mg of rifampin. It took months after only taking it for one day to feel normal again. I’m glad they were able to adjust yours to make it tolerable for you

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I can totally relate. Just one day can be too much for some people. I tried Azithromycin 250 mg just one day and had heart issues that lasted a few months.

REPLY
1fancydancer | @1fancydancer | Jun 15 8:44am

I take Azithromizen 3 x per week 500 mg to keep MAC away. It has worked only had it that one time in 2017.

REPLY
1 reply
susang53 | @susang53 | Jun 15 9:09am
In reply to @rbl "I don’t want to influence or discourage you in any way, your docs will advise you..." + (show)
@rbl

I don’t want to influence or discourage you in any way, your docs will advise you and doing your research is a good idea. I didn’t have this forum when I began or options 20 months ago. I started off with the wrong docs for me and my treatment was a bit messed up. I also have dyssutonomia so my body reacts differently to things. I originally started on daily treatment azithromycin, ethambutol, rifabitin, started 2 weeks apart. I got horrible flu like symptoms from rifabutin. After attempting it 2 times with same reaction, I was switched to levafloxacin, then went off that after 4 months due to tingly toes and achy joints. After 2 months of daily meds I went to 3 times a week. I had 7 sputum tests during that time and all were negative until my last one. I was only on azithromycin and ethambutol the last 8 months. My current doc wants 2 more sputum samples and we are waiting to see if I have symptoms the next 3 months. In hindsight, I regained weight plus extra, cough went away, and no more night sweats so I’m not upset I went on meds, just hoping I had a false positive. I just stopped meds one week before I got the news, I’m just trying to get my stomach healthy again and enjoy no meds as long as I’m able. I’m doing airway clearance and trying to eat well. My recent CT showed no change from 8 months ago so that’s good. One suggestion if you go on meds is to get hearing and eye eval first, I have a bit hearing loss and tinnitus but not sure if it was before meds since my hearing eval was 8 months after meds started. Good luck and hopefully you’ll be fine no matter what you choose.

Jump to this post

Wow…this is very helpful…I was on all 3 until the Rifabutin also caused TERRIBLE flu like symptoms. The pulmonary doctor took me off all 3, so now I am not taking any meds and waiting for an appointment for a consultation with an ID doctor…I have been waiting months!! It is good to hear that the 2 other meds seem to have worked without the rifabutin.

REPLY
1 reply
rescuemum | @rescuemum | Jun 16 7:34am
In reply to @susang53 "Wow…this is very helpful…I was on all 3 until the Rifabutin also caused TERRIBLE flu like..." + (show)
@susang53

Wow…this is very helpful…I was on all 3 until the Rifabutin also caused TERRIBLE flu like symptoms. The pulmonary doctor took me off all 3, so now I am not taking any meds and waiting for an appointment for a consultation with an ID doctor…I have been waiting months!! It is good to hear that the 2 other meds seem to have worked without the rifabutin.

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I’m intrigued by the success of the 2 antibiotic’s being a doable treatment plan too!! Good luck w the ID appt & hope this is an option for you!!

REPLY
rescuemum | @rescuemum | Jun 16 7:37am
In reply to @1fancydancer "I take Azithromizen 3 x per week 500 mg to keep MAC away. It has worked..." + (show)
@1fancydancer

I take Azithromizen 3 x per week 500 mg to keep MAC away. It has worked only had it that one time in 2017.

Jump to this post

Did you take the Big 3 initially to clear the MAC & then the Azithromycin 3xs wk as a pulse type of therapy to keep it at bay? Thanks so much!!

REPLY
1fancydancer | @1fancydancer | Jun 16 8:24am

What is the Big 3?

I don't remember what I took to get rid of the MAC. It has been so long ago. It seemed to go quickly with the antibiotic I took though. . And YES, I do take the Azithromycin to keep MAC at bay. If I remember correctly , MAC colonizes in the body and can come back at any time. Whenever I cannot breath and lots of muscus that changes texture and color, then I know to start the sputum samples. The lab will grow them out and send back a report to your dr concerning what bacteria you have and what meds that will work best to get rid of it. The report will also state what the bacteria is now immune to. Your treatment is based mostly on the lab results. What drug works the first time may not work the 2nd time.

REPLY
1 reply
rescuemum | @rescuemum | Jun 16 1:56pm
In reply to @1fancydancer "What is the Big 3? I don't remember what I took to get rid of the..." + (show)
@1fancydancer

What is the Big 3?

I don't remember what I took to get rid of the MAC. It has been so long ago. It seemed to go quickly with the antibiotic I took though. . And YES, I do take the Azithromycin to keep MAC at bay. If I remember correctly , MAC colonizes in the body and can come back at any time. Whenever I cannot breath and lots of muscus that changes texture and color, then I know to start the sputum samples. The lab will grow them out and send back a report to your dr concerning what bacteria you have and what meds that will work best to get rid of it. The report will also state what the bacteria is now immune to. Your treatment is based mostly on the lab results. What drug works the first time may not work the 2nd time.

Jump to this post

Excellent info & thank you for clarifying on my behalf & others!

A culture & sensitivity was performed on my 3 sputum samples & the report did list the antibiotics that would be effective against it…I don’t recall the antibotics listed but I fo remember that several of them the bacteria was resist to which frightened me! I’ll look at my records & refresh my memory! Thanks again!!

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