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Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC
MAC & Bronchiectasis | Last Active: Nov 3 10:53pm | Replies (126)Comment receiving replies
Linda-
Do you have any new, the latest, studies with BE/MAC patients being on Azithromycin and Ethambutol only, no Rifampin.
I am wanting to make my decision to take the two, but would like to read and know as much as I can....... what the latest findings, studies are with the drugs. The only information I found was from 2017 and 2016 and it could be totally different by now?? Those NIH studies weren't showing the success we all we like to hear with taking the two. Of course, there were some success stories in the studies.
I have heard about the medication Arikayce and wonder if I should do all I can to get into a study and start just with the Arikayce, if that is how they do it...just Arikayce.
I have read many posts here, and as we know, with all different results. Most were on the 3 medications whereas Tyler said "not putting you on Rifampin." I trust that she had a good reason why not to put me on Rifampin, I forgot to ask why not.
Hope you are doing well.
Thanks,
Barbara
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Barbara, only Azithromycin or Clarithromycin and Ethambutol are necessary. Rifampin is no longer considered necessary according to my ID doctor (Dr. Wessolossky) at UMASS. I always thought anything that makes your pee red can’t be good. I know it was the pill dye, but gee whiz! In order to be on Arikayce it is my understanding that a patient has had to be on the other two for at least six months and had no improvement or was unable to tolerate them. I am the latter as I tried for five years - talk about perseverance!! And then came Arikayce as a clinical trial for me, and it cured me of MAC and thankfully with few observable side effects. I say observable because it did inflame my lungs which led to a really big ordeal for me after a robotic surgery, but I have heard of nobody else who had that issue! I lost over 18% of my body weight during these years and am holding at 73 pounds. My appetite is good, and I drink lots of Ensure, but have never gained the weight back. I was always 95 -100 pounds and am 5 feet tall. (used to be taller but have shrunk like the witch in the Wizard of OZ- “I’m shrinking!”). I have had other lung infections since MAC including Aspergillosis and RSV with bronchiolitis. I am 75. God is good! Like everything else in life as trite as it may sound - It’s all in the attitude! ( Irene5)