Big 3 Daily? What’s your dosage?

Posted by BlueSplashGirl/ Carolyn @bluesplashgirl, Apr 18, 2020

Hi Everyone,
I have seen dosage posts about 3x a week, etc. I am on a high dosage daily. Ethambutol 1000mg, rifampin 600mg, azithromycin 250mg. Any comments, questions, concerns regarding this? If I Google the meds I get the typical scary Google stuff. Thank you and I hope everyone is staying home, safe and well.

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@bluesplashgirl The dosage of ethambutol is based on weight. Rifampin 600 is typical. The azithromycin dose is usually 500, but since you said “daily” I am guessing your doctor decided on 250 based on risks and benefits. I was told by one of my UMass doctors that the ethambutol dose depends also on severity of the disease . When we lived in Tennessee I was always on 15/kg of body weight. Now I am on 25/kg of body weight. I hope that answers at least one question for you. irene5

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@bluesplashgirl Carolyn – I don't think your dosage is atypical. I was originally on 3X/week with the same doses except 500mg of azith. Then, as my MAC was not responding after a year and my symptoms were not improving, the ID doc increased it to daily for 6 months without reducing dosages. My lungs finally showed improvement, but my body HATED the meds, and the MAC was still in my culture – we decided together in consultation with pulmonology & NJH, to stop and see what happens. I use levalbuterol and 7% saline nebs and airway clearance, we were to check again in 4 months to see how it's going, but Covid…now it's a waiting game as the clinic is closed to all but the most urgent cares, so I shall see him and the pulmonologist in June.
Exercising the utmost caution to stay safe – not only for myself, but my at-risk husband as well.
Sue

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@sueinmn

@bluesplashgirl Carolyn – I don't think your dosage is atypical. I was originally on 3X/week with the same doses except 500mg of azith. Then, as my MAC was not responding after a year and my symptoms were not improving, the ID doc increased it to daily for 6 months without reducing dosages. My lungs finally showed improvement, but my body HATED the meds, and the MAC was still in my culture – we decided together in consultation with pulmonology & NJH, to stop and see what happens. I use levalbuterol and 7% saline nebs and airway clearance, we were to check again in 4 months to see how it's going, but Covid…now it's a waiting game as the clinic is closed to all but the most urgent cares, so I shall see him and the pulmonologist in June.
Exercising the utmost caution to stay safe – not only for myself, but my at-risk husband as well.
Sue

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thanks for the info. I also neb 7% twice a day. I hope if I just bare with it I wi get rid of it sooner than 18 months. Best to all and stay safe.

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@sueinmn

@bluesplashgirl Carolyn – I don't think your dosage is atypical. I was originally on 3X/week with the same doses except 500mg of azith. Then, as my MAC was not responding after a year and my symptoms were not improving, the ID doc increased it to daily for 6 months without reducing dosages. My lungs finally showed improvement, but my body HATED the meds, and the MAC was still in my culture – we decided together in consultation with pulmonology & NJH, to stop and see what happens. I use levalbuterol and 7% saline nebs and airway clearance, we were to check again in 4 months to see how it's going, but Covid…now it's a waiting game as the clinic is closed to all but the most urgent cares, so I shall see him and the pulmonologist in June.
Exercising the utmost caution to stay safe – not only for myself, but my at-risk husband as well.
Sue

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Hi Sue, What were your results after the 4 month check in? I am waiting for a negative sputum but if it isn't then I need to change course.
Thank you!
Carolyn

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@bluesplashgirl

Hi Sue, What were your results after the 4 month check in? I am waiting for a negative sputum but if it isn't then I need to change course.
Thank you!
Carolyn

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My sputum cultures never "converted" to negative after stopping the antibiotics, but my ID and Pulmo docs said that was not unexpected. However, my annual lung CT's have shown no new evidence of cavities, pockets or ground glass opacities, which indicate progression of infection. We are no longer checking sputum because I have maintained my health with mucolytics, 7% saline and airway clearance since December 2019, with only one major exacerbation nearly one year ago (treated with steroids and short course of single antibiotic.)

I have begun to think about NTM infections more like my ID doc – he compares it to positive TB on the Gold test, but having neither symptoms nor CT evidence of advancement – watch and wait, treatment optional. I do not ever plan to go back on the Big-3 unless I get sick & the CT shows progression…way too had on this old body!

How do your lung CT's look? Did you have one before stopping antibiotics to compare with a new one?
Sue

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Thanks for the response, Sue. I am suppose to have a year of negative sputum after my first negative one. They say I will continue the meds during that year. My last CT was in March and it shows great results with the collapse of the cavity and some of the nodular infiltrate looks much better. Perhaps they should be looking at that too as opposed to just the sputum? Anyway, I meet with my infectious disease doc next week for next steps. Fingers crossed. The meds are really kicking my rear again.
Carolyn

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@sueinmn

My sputum cultures never "converted" to negative after stopping the antibiotics, but my ID and Pulmo docs said that was not unexpected. However, my annual lung CT's have shown no new evidence of cavities, pockets or ground glass opacities, which indicate progression of infection. We are no longer checking sputum because I have maintained my health with mucolytics, 7% saline and airway clearance since December 2019, with only one major exacerbation nearly one year ago (treated with steroids and short course of single antibiotic.)

I have begun to think about NTM infections more like my ID doc – he compares it to positive TB on the Gold test, but having neither symptoms nor CT evidence of advancement – watch and wait, treatment optional. I do not ever plan to go back on the Big-3 unless I get sick & the CT shows progression…way too had on this old body!

How do your lung CT's look? Did you have one before stopping antibiotics to compare with a new one?
Sue

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PS – so glad you are doing well and thank you, again, for your mentorship. It is so greatly appreciated.

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I am also on all three meds. Ethambutol 400 mg twice daily, Azithromycin 250 mg once a day, and Rifampin 300 mg once daily. Two years so far and still dealing with it.

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