1. < MAC & Bronchiectasis

Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

Posted by cmi @cmi, Dec 11, 2020

I have just begun my drug therapy for MAC. Question, does anyone have any advice on how to take the cocktail of azithromycin, ethanbutol, & rifampin, and suffer the least discomfort. I am taking my meds at night 4 hrs PO after I go to bed (set alarm clock and wake up to take) 3 days a week. I was very discouraged by pharmacist and ID doctor on how brutal the meds are to the system.

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irenea8 | @irenea8 | Apr 18 7:25am
In reply to @franie "It took my Dr over tons of tests for over two yrs, then I changed Drs..." + (show)
@franie

It took my Dr over tons of tests for over two yrs, then I changed Drs to really great Mayo trained Internal med Dr and he fought insurance to be able to do a bronchoscope as I was finally coughing up blood . Results came back positive and had 60 days of IV Amikacin , Moxicycllin , daily with oral Clarithromycin twice daily and oral Ethambutol. I also, by that time needed monthly IVGG ( which I still get every six weeks) . During three years of misdiagnosising; everything tanked and many nodules developed . I tolerated the Ethambutol for a year but had optic nerve damage so my Eye Dr stopped it after MRI .I saw my eye Dr every two months while on Ethambutol . During the three years of suffering and finally getting a Dr to truly investigate, I yawned constantly , had to push into my lower left lobe just to get a breath and had chronic night sweats , and could only get a normal breath if I was totally flat . Extremely tired, severely depressed and lost all hope as when I went to ER they treated me like I just needed an inhaler and a psychiatrist. My CBC and other labs came back fine and I had no elevated temp. So , I know this is very long but I thank God every day for that Dr who saved me and I just want to share that if you do not have a Dr that can figure it out; keep searching and fighting for yourself with this silent destructive lung infection . I completed my antibiotic treatments in 2013 and I am doing fine now , still getting IVGG every six weeks , but just want to share my story to help others

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What immune test led to the IVGG treatments?

REPLY
nonamebrand | @nonamebrand | Apr 18 10:58am
In reply to @franie "It took my Dr over tons of tests for over two yrs, then I changed Drs..." + (show)
@franie

It took my Dr over tons of tests for over two yrs, then I changed Drs to really great Mayo trained Internal med Dr and he fought insurance to be able to do a bronchoscope as I was finally coughing up blood . Results came back positive and had 60 days of IV Amikacin , Moxicycllin , daily with oral Clarithromycin twice daily and oral Ethambutol. I also, by that time needed monthly IVGG ( which I still get every six weeks) . During three years of misdiagnosising; everything tanked and many nodules developed . I tolerated the Ethambutol for a year but had optic nerve damage so my Eye Dr stopped it after MRI .I saw my eye Dr every two months while on Ethambutol . During the three years of suffering and finally getting a Dr to truly investigate, I yawned constantly , had to push into my lower left lobe just to get a breath and had chronic night sweats , and could only get a normal breath if I was totally flat . Extremely tired, severely depressed and lost all hope as when I went to ER they treated me like I just needed an inhaler and a psychiatrist. My CBC and other labs came back fine and I had no elevated temp. So , I know this is very long but I thank God every day for that Dr who saved me and I just want to share that if you do not have a Dr that can figure it out; keep searching and fighting for yourself with this silent destructive lung infection . I completed my antibiotic treatments in 2013 and I am doing fine now , still getting IVGG every six weeks , but just want to share my story to help others

Jump to this post

If I could afford Mayo or NJC that's where I'd be !! But that's not the case .I have now four id Drs who are not treating me like a person but a disease only .Getting shuffled around from one to another and all they do is compare notes from last follow up ...nobody on the same page .Different Dr different protocol ,don't know who to trust anymore .
Didn't want to take the antibiotics but the weight loss I suffered is going to be my death not ntm .it's called cachexia .I'm down to 78 lbs ,Trying to put me now on antidepressant for the forth time and I can't take those .Weird is after I did research on this one it is not compatible with any other drugs I'm taking ,so I won't touch them ....I have no appetite on these antibiotics and am having a very hard time .I have or had no symptoms at all except weight loss and should have waited until I put on a few lbs more to start .I'm at a total loss at what to do ???😥

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