Length of Time on Antibiotic Regimen

I, too, wonder about the ill effects of being on so many antibiotics for such a long period of time. Given the comments on this page, I'm beginning to think the year of treatment that my pulmonologist initially mentioned is actually a lowball estimate. It's disheartening, especially since I'm someone who used to enjoy having to take almost no meds her whole life. But dealing with real answers, however disheartening, has felt better than dealing with false hopes.

I have Non-tubercular mycobacteria and Bronchiectasis. I am taking the 3 antibiotics for the MAC. I was diagnosed after a bronchial wash. It took 6 weeks for the culture to grow. He is treating the Bronchiectasis because I have a secondary infection from a cold. I don't know if it is even the Bronchiectasis causing me problems. I know I have an infection because I am running a 101 fever. I have no symptoms from MAC. I am worried now, though. I just finished a week-long antibiotic to treat the secondary infection, and I am no better. I am waiting for the doctor to get back to me with the next step. I am starting to feel like this will not get any better. Even with my severe asthma, I never had more than 4 days of breathing issues. I'm going on 4 weeks now. I know what happens when it can't be improved, and I am not ready.

I'm going on 7 years of the Big 3, 6 years of inhaled Arikayce and 2 years of Clofazamine.

With fever of 101, I’d encourage you to be persistent in contacting your doc. Are you doing airway clearance?
I’m so sorry you’re having a hard time.

Hi Lorrie, I started the three time/week regimen (azithromycin, ethambutol, rifampin) for MAC in Feb 2023 and with no success, moved to the daily regimen around August 2023. A number of months later (still with no success) we added clofazimine. In August 2024, I started Arikayce daily. I lost my voice completely by day 7, stopped the meds for 2 weeks until it came back, then started the 3x/week Arikayce protocol. After just a month of treatment, I had my first MAC negative culture. So don't give up hope.

I know your excited about your negative culture, and I'm very encouraged by it. Two questions: Have you been taking the Arykace along with your med regimen, and will you have to be on the Arykace for a year?

Hi Lorrie, I was on 4 antibiotics - azithromycin, ethambutol, rifampin and clofazimine and didn't clear, at which point I added the Arikayce, which was the fifth. The protocol is to continue on all the meds you are on for a year at the point when you clear MAC, but I actually had to stop ethambutol a month ago (I had an visual evoked potential test which showed ocular nerve neuritis resulting from the ethambutol; this fortunately preceded any measurable changes in my vision and will hopefully resolve with time). So this week I am getting 3 AFB cultures and hopefully they will be negative without the ethambutol. If so, I will stay on the 4 antibiotics for a year and then be done with treatment.

I don't have much to cough up. I mostly just clear my throat. I have never shown fluids in the lungs or bronchial tubes, so it is probably a good sign you're not feeling like you have mucus and don't cough anything up. Once you experience a long illness, like my asthma, you find you can pinpoint every pain, movement, or difference in your body and know exactly what it can be or at least describe it enough that your doctor can most accurately make a diagnosis from it.

I have lost some weight, which is bad because I was at my BMI exactly. I lost it from the active infection I am having now, not the MAC (My regular doctor was surprised I wasn't wasting away when he first saw me after the diagnosis. I went down 8 lbs. and found myself back at my lowest weight. I got to this weight before because I spent almost a month in the hospital with blocked intestines. My insurance wouldn't transfer me to the hospital my surgeon was at because they couldn't get it wrapped around their brains that I was in a brand new hospital where I was the first to be admitted, and they didn't have someone who could do the surgery because I had gastric bypass. My surgeon said I had 2 days at the most to live when I got to him.

One of those stories we all wish never had to be mentioned or told. "My insurance wouldn't transfer me to the hospital my surgeon was at because they couldn't get it wrapped around their brains that I was in a brand new hospital where I was the first to be admitted, and they didn't have someone who could do the surgery because I had gastric bypass.""
Hope certain insurance decisions begin to change, be it due to and with the terrible resent incident that caused/causes heartbreak and sadness for so many or due to less need for higher profit margins.
Barbara

What are the usual doses prescribed for azithromycin, ethambutol, and rifampin in milligrams (mg) and number of pills for each? Thank you