Length of Time on Antibiotic Regimen

Posted by lorrie48 @lorrie48, 6 days ago

I was wondering how long the people here have been or had been taking the Triple Cocktail. I'm also curious about the dosages you've been prescribed. I started with 1 azithromycin, 1 ethambutol, and 2 rifampin 3x/wk. Four months in, my pulmonologist prescribed 1-3-2 3x/wk. I expect the dosages to be increased again, since the coughing has increased, not decreased, since I started the meds six months ago. I'd really appreciate hearing about the success of others' treatments.

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I am told it will be a year or more. I started and am on three times a week, 1, 2, and 3 pills at 500 mg each. They coincide with your medication numbers by the antibiotic. I have no cought and will be getting a blood test next week which will be the baseline for the virus load, I believe that is what it checks. My symptoms are from the bronchiectasis. And that only started from getting a cold.

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@ldylouis

I am told it will be a year or more. I started and am on three times a week, 1, 2, and 3 pills at 500 mg each. They coincide with your medication numbers by the antibiotic. I have no cought and will be getting a blood test next week which will be the baseline for the virus load, I believe that is what it checks. My symptoms are from the bronchiectasis. And that only started from getting a cold.

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Thank you, Kristi, for your feedback. I didn't have a cough either ... in the very beginning. A calcium score prescribed by my cardio doctor indicated infiltrates in my lungs. So, no symptoms, but these infiltrates. Another year passed before I had a definite diagnosis of MAC and began the antibiotics. By then I was chirping more than coughing. Now I'm coughing, on and off during the day but mostly when I wake up in the morning. Coughing and sometimes losing my breath. I'm reading here for the first time about airway cleansing. I don't know what that involves. Do you?

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@ldylouis

I am told it will be a year or more. I started and am on three times a week, 1, 2, and 3 pills at 500 mg each. They coincide with your medication numbers by the antibiotic. I have no cought and will be getting a blood test next week which will be the baseline for the virus load, I believe that is what it checks. My symptoms are from the bronchiectasis. And that only started from getting a cold.

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Kristi - I am totally confused! Are you being treated for non-tubercular mycobacteria (referred to as NTM, MAI or MAC), pseudomonas, or something else? Were you diagnosed using a sputum culture or a bronchoscopy?
The current bacterial infection loads for NTM and pseudomonas are determined by sputum cultures, which take 2 weeks for pseudomonas and 6-8 weeks for NTM to grow sufficiently to be fully identified. I am unfamiliar with any blood tests for this purpose.
Maybe they are checking to be sure your kidneys and liver are functioning properly, as these medications can affect them.

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I was on the big 3 for 2 1/2 years, but after 1 year was taken off Ethambutol because of eye problems. I was then put on Arycase for 1 year but my cough kept getting worse so I was taken off it. I had my last CT scan about 6 mos ago and it was much better, in fact I was taken off all antibiotics. So far I have beat MAC and at 77 years old I feel I am very lucky. However I did suffer from MAC for 7 years before it was diagnosed, loosing 100 lbs.

Good luck to you and don't get discouraged it can get better. Just remember everyone is different. It may take longer for some and some antibiotics work good for some and not for others. Hang in There!

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@lauraadam2425

I was on the big 3 for 2 1/2 years, but after 1 year was taken off Ethambutol because of eye problems. I was then put on Arycase for 1 year but my cough kept getting worse so I was taken off it. I had my last CT scan about 6 mos ago and it was much better, in fact I was taken off all antibiotics. So far I have beat MAC and at 77 years old I feel I am very lucky. However I did suffer from MAC for 7 years before it was diagnosed, loosing 100 lbs.

Good luck to you and don't get discouraged it can get better. Just remember everyone is different. It may take longer for some and some antibiotics work good for some and not for others. Hang in There!

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Thanks so much for the feedback. The more I read, the more I understand about everyone's MAC experience being different. That alone is worth knowing. So glad to hear you beat MAC, especially given all the factors you described. Stay well.

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@lorrie48

Thanks so much for the feedback. The more I read, the more I understand about everyone's MAC experience being different. That alone is worth knowing. So glad to hear you beat MAC, especially given all the factors you described. Stay well.

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I started out with the big 3 seven months ago, 3 times/week. After a month the rifampin was discontinued due to terrible headaches. I've continued to take ethambutol and azithromycin 3 days a week with no problems. My last two CT scans showed no worsening, but no improvement either. I'll have another bronchoscopy after the first of the year. Good luck!

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I take the big 3, 7 days a week. It took me a little over a month to adjust to them. I have been on them for 4 months. I can't cough anything up so I'm sure another bronchoscopy is in my future. I had a fungus that I believe a 10 day antibiotic treatment cured. I'm being treated for 3 ntm. I'm short of breath but I can do all my daily stuff. I still get fatigue but it's significantly reduced. Someone said to make sure everything you eat or drink has calories. I'm 5 pounds above my minimum weight. I eat a lot of food. But I'm also diabetic, so I have to be careful. I don't feel like I have mucus in my lungs. I really can't cough anything up. Oh, I also have bronchitisas. I'm 71. All of this started after I got covid. I went a year before I started treatment.

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@ace71

I take the big 3, 7 days a week. It took me a little over a month to adjust to them. I have been on them for 4 months. I can't cough anything up so I'm sure another bronchoscopy is in my future. I had a fungus that I believe a 10 day antibiotic treatment cured. I'm being treated for 3 ntm. I'm short of breath but I can do all my daily stuff. I still get fatigue but it's significantly reduced. Someone said to make sure everything you eat or drink has calories. I'm 5 pounds above my minimum weight. I eat a lot of food. But I'm also diabetic, so I have to be careful. I don't feel like I have mucus in my lungs. I really can't cough anything up. Oh, I also have bronchitisas. I'm 71. All of this started after I got covid. I went a year before I started treatment.

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Seven days a week?!!! That had to have taken some adjustment. I myself look forward to the weekends, when I feel like my body has some recovery time. If I don't start improving, though, I half-expect I might be facing 7 days a week as well. When I was first diagnosed last spring, I barely had a dry cough. But as time as passed, despite the antibiotics, the cough has increased (especially when I first get up in the morning), and I have occasional shortness of breath. Like you, neither is debilitating, just not what I expected after six months of treatment. I'm so glad I found this site. Up to now, I've felt like I was in a MAC bubble. So, I appreciate your response very much.

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I was on the big three no issues for over two years but drug resistance to azithromycin. Went to national Jewish in Denver. Treatment plan is amikacin infusion three days a week plus four oral antibiotics. Was pretty upset at first but need to have faith that god is with me and not let the devil get in my head. Love this site has helped me a lot

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The guidelines say that treatment should be continued for one year of negative cultures
There is some evidence that treatment for 18 months reduces the risk of relapse and that is what I did. No Mac for three years and off treatment two years next April.
Doing well but much more sputum in last two years and now colonized with Staph aureus. I do sometimes wonder about whether this is just the progression of bronchiectasis or worsened by 4 years of antibiotics including 20 months of Arikayce

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