1. < MAC & Bronchiectasis

Daily dosage of Rifampin Ethanbutol and Azithromycin

Posted by debminuet @debminuet, Dec 4, 2018

Hi there everyon
I was treated for MAC two years ago 3 x weekly, Ethambutol/Rifampin/Azithromycin Ive recently had scan with buds showing and have symptoms and am now prescribed to take this every day and Im scared. I didnt have side effects last time but taking this every day is scary. Does anyone have any experience of daily meds as such???

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marilynk | @marilynk | Dec 23, 2018
In reply to @windwalker "@marilynk Hi Marilyn. I cannot answer your question, but I am sure someone will jump in..." + (show)
@windwalker

@marilynk Hi Marilyn. I cannot answer your question, but I am sure someone will jump in soon who can. I just wanted to say that I am sorry to hear that your lungs are so infected. I know how uncomfortable it is, and worrisome also. I hope that you can find a way to enjoy the holidays regardless.

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That’s what is so interesting - my lungs always sound clear to be as infected as they are. I have lots of energy, good appetite. Enjoying life. I was first diagnosed with bronc, Mac, nocardia and asperjelous (not sure of that spelling) in 2003. Treated for a year with these same meds. I was diagnosed at National Jewish Research Center in Denver & had no problems with the meds. Treated off and on thru the years with different infusions. So here I am again at 82. Thank you for your good thoughts.

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summer33 | @summer33 | Dec 24, 2018
In reply to @hydrang3a "@Havah and Onana.....Probiotics help intestinal problems but there are so many other side effects resulting from..." + (show)
@hydrang3a

@Havah and Onana.....Probiotics help intestinal problems but there are so many other side effects resulting from taking the big three every day as I do. I am on a high daily dosage and although the doctors are concerned about losing sight and hearing......one thing most doctors don’t prepare you for is the huge changes in your mental and emotional well being. These drugs affect every part of your brain, attacking emotion and cognitive centers as well as more obvious physical ones. It goes beyond just not feeling yourself all the way to feeling like you are inhabited by the devil. Everything looks bleak, Hope is lost. You rant, you cry. It is simply horrible. You feel completely miserable. It doesn’t last all day thank God but you can’t predict when it will come on or how long it will last. Ive been on these drugs for 6 months plus Arikayce since October and there hasn’t been a day since that I have not broken down sobbing in tears. This is not like me...in fact I haven’t felt like me since last May. I’m pretty miserable. And I am looking forward to the day I don’t have to take them.Anyone else find these drugs emotionally denilitating?

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I also felt like you. Some days I only wanted to crawl in the bed and stay there head covered. I have decided to stop all MAC MECICATION due to feeling as I had no life. I do not think I will go back on any of the meds due to feeling worse on them as without. My diease doctor wants to start me on akaryace as well as the Big 3, my pulmonary doctor seems to feel like it is too much for my body. I have been off two weeks and feel much better. My ringing ears are less since I have stopped. Many wishes for all of you, we have to listen to our body and do what we feel is best.

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healthybon | @healthybon | Aug 10, 2023
In reply to @hydrang3a "To@marilynk....I started Arikayce on Nov 12 and have been on the Big 3 for six months...." + (show)
@hydrang3a

To@marilynk....I started Arikayce on Nov 12 and have been on the Big 3 for six months. I’ve had a sore throat and have had emotional ups and downs. I too am very concerned about the serious side effects. Being on any kind of medication for a long period of time is tough on us....but so is this disease. I am vigilant following all the instructions and getting periodic eye and ear and blood check ups. The troubling thing I find is how little doctors know about this drug....and their lack of experience with patients taking it. Still I plan to continue with it unless side effects become overwhelming. Id like to hear from everyone taking Arikayce...we can be a great help to each other!

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Hello Hydrangea
I’m on Ethambutol and Azithromycin three times a week. How are you doing these days?

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healthybon | @healthybon | Aug 10, 2023
In reply to @marilynk "I was on the 3 a few years ago and did not have a problem but..." + (show)
@marilynk

I was on the 3 a few years ago and did not have a problem but wonder about now, 5 years later. He wants me to go on them again plus the Arikares. At this stage I’m soon to be 83 and I’m healthy and lots of energy - do I want to give that up??

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Did the 3 clear you up?

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ncalvan | @ncalvan | Aug 11, 2023

I’ve been on the three antibiotics for two years and Arikayce for 18 months. My MAC cleared. I continue treatment until January. The Arikayce is a wonder drug if you’re faithful with it daily. The meds wear me down a bit but nothing I can’t manage. I would recommend taking a good probiotic to manage the gastro side effects. Now I hope I can stay clear. I’m stubborn about using the airway clearance tools regularly. Any advice on that is welcomed.

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1 reply
pollyflinders | @pollyflinders | Aug 11, 2023

I’ve been on all 3 drugs daily for 8 months now and so far have had very little in the way of side effects. Good luck!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 11, 2023
In reply to @ncalvan "I’ve been on the three antibiotics for two years and Arikayce for 18 months. My MAC..." + (show)
@ncalvan

I’ve been on the three antibiotics for two years and Arikayce for 18 months. My MAC cleared. I continue treatment until January. The Arikayce is a wonder drug if you’re faithful with it daily. The meds wear me down a bit but nothing I can’t manage. I would recommend taking a good probiotic to manage the gastro side effects. Now I hope I can stay clear. I’m stubborn about using the airway clearance tools regularly. Any advice on that is welcomed.

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Hello, and welcome to Mayo Connect. I am so happy to hear that the regimen has cleared your MAC.
What airway clearance routine are you using? Do you use inhaled 3% or 7% saline? For those of us who have ended antibiotic treatment, has been a "game changer" in staying healthy. In addition to thinning the mucus to make it easier to expel, the saline makes our lung an unhappy place for the bacteria, so it seems to stay away.
Sue

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lilianna | @lilianna | Aug 11, 2023

I am responding to the post regarding rifabutin and liver problems. I started the mac and bronchiectasis treatment in April 2023 with azithromycin 500 mg, amikacin infusion 3x a week and daily rafabutin (ethambutol was not on the sensitivity list). I had a lot of liver problems and through the elimination process the doctor decided to stop rifabutin and I was put on clofazimine instead. I also continued a month longer with the Amikacin infusions. After literary two weeks my liver enzymes came back to normal and they stay the same so far. Well there are other problems such as leg pain and falling out hair but my liver is fine.

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