1. < MAC & Bronchiectasis

Has anyone been on azithromycin, rifampin, and clofazomine cocktail?

Posted by dmarks @dmarks, Oct 29, 2017

I am on my second reinfection after being treated at NJH, which I love my Dr. Now she wants me on the cocktail listed above and I was wondering if anyone else has been on this cocktail? Any other suggestions as I am very nervous.

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dmarks | @dmarks | Nov 16, 2017

ethambutol almost killed me so my Dr. switched me to inhaled amikacin. Now since the reinfection I am on clofazamine....wish you well

REPLY
Sophie | @sophie1019 | Nov 18, 2017
In reply to @sophie1019 "Hi I am on Rifadin and azthroymcin and a new one, moxifloxacin. You have to have..." + (show)
@sophie1019

Hi I am on Rifadin and azthroymcin and a new one, moxifloxacin. You have to have hearing tested while in rifampin. I have been on for over a year, hearing just fine....

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I'm on the same three. Hearing fine also...

REPLY
Carolyn | @cld120 | Nov 25, 2017

These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin and Rifampin a week apart each. My ID doc decided I should d/c all of them since I don’t have any symptoms & seem to be doing well overall. (59 yo, exercise regularly, no night sweats, wt loss or lung infections since last winter.) However, I don’t know the species or colony size as @windwalker (Teri) recommends. Can MAC be worsening even though I feel good? Thanks, i’ll Look into that this week!!

REPLY
5 replies
Sophie | @sophie1019 | Nov 25, 2017
In reply to @cld120 "These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin..." + (show)
@cld120

These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin and Rifampin a week apart each. My ID doc decided I should d/c all of them since I don’t have any symptoms & seem to be doing well overall. (59 yo, exercise regularly, no night sweats, wt loss or lung infections since last winter.) However, I don’t know the species or colony size as @windwalker (Teri) recommends. Can MAC be worsening even though I feel good? Thanks, i’ll Look into that this week!!

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Good morning, I am dealing with MAC too. I feel good, work out every day and I also work everyday. I am waiting g for test results to come back from Colorado to see if MAC is gone or has decreased.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 25, 2017
In reply to @cld120 "These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin..." + (show)
@cld120

These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin and Rifampin a week apart each. My ID doc decided I should d/c all of them since I don’t have any symptoms & seem to be doing well overall. (59 yo, exercise regularly, no night sweats, wt loss or lung infections since last winter.) However, I don’t know the species or colony size as @windwalker (Teri) recommends. Can MAC be worsening even though I feel good? Thanks, i’ll Look into that this week!!

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@cld120, I do not know the answer to that question. Not even sure it is that cut and dry. I have heard of people being shocked that they were infected because they had no symptoms. I always get symptoms, but who really knows what those bugs are doing down inside of us. That is a question worth investigating.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 25, 2017
In reply to @cld120 "These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin..." + (show)
@cld120

These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin and Rifampin a week apart each. My ID doc decided I should d/c all of them since I don’t have any symptoms & seem to be doing well overall. (59 yo, exercise regularly, no night sweats, wt loss or lung infections since last winter.) However, I don’t know the species or colony size as @windwalker (Teri) recommends. Can MAC be worsening even though I feel good? Thanks, i’ll Look into that this week!!

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@sophie1019 Sophie, will be praying that your results come back clean. You sound like you are doing well. Keep it up!

REPLY
Carolyn | @cld120 | Nov 25, 2017
In reply to @cld120 "These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin..." + (show)
@cld120

These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin and Rifampin a week apart each. My ID doc decided I should d/c all of them since I don’t have any symptoms & seem to be doing well overall. (59 yo, exercise regularly, no night sweats, wt loss or lung infections since last winter.) However, I don’t know the species or colony size as @windwalker (Teri) recommends. Can MAC be worsening even though I feel good? Thanks, i’ll Look into that this week!!

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Thanks, Teri. I feel like I can never do enough research on MAC. i’ve Taken a break the last few months since being off the meds but feel like I need to be vigilant. My pulmonologist recommended a vibrating Aflovest, which I wear for 30 minutes twice Daily. Seems to loosen up chest phlegm a bit. Ah well, at least we’re not alone since we have this forum. Happy holidays to all! Carolyn

REPLY
Sophie | @sophie1019 | Nov 25, 2017
In reply to @cld120 "These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin..." + (show)
@cld120

These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin and Rifampin a week apart each. My ID doc decided I should d/c all of them since I don’t have any symptoms & seem to be doing well overall. (59 yo, exercise regularly, no night sweats, wt loss or lung infections since last winter.) However, I don’t know the species or colony size as @windwalker (Teri) recommends. Can MAC be worsening even though I feel good? Thanks, i’ll Look into that this week!!

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Thank you so much. Will keep you posted.

REPLY
Sophie | @sophie1019 | Dec 9, 2017
In reply to @colleenyoung "Welcome to the MAC group on Connect, @dmarks. I'm tagging a few members who I believe..." + (show)
@colleenyoung

Welcome to the MAC group on Connect, @dmarks.
I'm tagging a few members who I believe have taken antibiotics for MAC - the big 3 as they are often referred to here. Please meet @windwalker @tdrell @Paula_MAC2007 @lindam272 @irene5 @ling123 and @heathert. You can read more about theirs and other members on this main discussion thread:

- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

DMarks, how was your first infection treated?

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Good morning do you know of anyone on an iv? I was on amikican but that affected my kidneys so I had to stop. Then the doc wanted to try tigecycline but it has a warning in bold letters, can cause death.....so I REALLY decided against that. Now I have a choice of taking clofazimine, along with rifampin, and moxiflocin. The doc wants me to stop taking azithromyxin and start clarithromycin, but when I picked it up from walgreens, the pharmacist said you shouldn't take clarithromycin am moxifloxacin together because it can affect heart rhythm. I feel like giving up and just take the rifampin, moxifloxacin and azithromyxin. I am tolera ring very well. Any thoughts?????

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