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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@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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@eflory

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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Hello and welcome to Mayo Connect. Many of us have endured the Big 3, but 2 years is approaching a long time…and your dosage is quite a bit different than I used .

What symptoms do you experience? Have any improved with treatment?

Can you tell me a little more about your diagnosis and testing? How often is a sputum culture being done, how about CTs?

Whew, just read my note- that's enough questions for one post!

Have you done a little reading here in Connect to see how other members are handling things? I look forward to chatting with you about how you are doing.
Sue

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Hi Sue – Thank you for responding because there are times when I lost hope that I will ever get over this.

As for symptoms – the main one is coughing up green mucous from the time I get up in the morning until I go to bed at night. I also don’t have any appetite and live on Ensure Plus Smoothies with berries and a banana in it. One pulmonologist said it took doctors so long to diagnose me that my body was full of bacteria so it robbed me of any hunger.

The sputum cultures are being done every 9 months or so – 3 cultures one day apart for each round. The latest one was just done the end of March but my doctor’s appt isn’t for scheduled for another 3 months. A CT in the very beginning 2 yrs ago but none since then. My husband is the one who said the other day he doesn’t think any of the doctors are helping me. He actually went online and found this site because this has really changed both of our lives.

You’ve lived through this so have you been cleared now?

Thank you because now I can communicate with to someone who has endured this also. I read where it is more common in women over to living in coastal areas. I am now 75 and live just across the bridge from the Gulf in Pinellas County FL so a prime candidate.

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Tell your husband that I credit my ability to live well with this disease to the people on Mayo Connect and all I have learned here.
Bronchiectasis is considered an uncommon disease, and not every pulmonologist or infectious disease doc is familiar with the MAC and other infections we acquire. Do you know how much experience your docs have? It took me a couple tries to find the right combination of providers.
Have you considered seeking care at Mayo Jacksonville or another large facility?

Second, the medication, even more than the disease, takes a huge toll on our bodies and a lot of us look for ways to stop them and still stay healthy.

One of the gold standard providers is National Jewish health in Denver (NJH) Along with some other centers they have found nebulizing 7% saline and doing airway clearance daily can sometimes be used in place of antibiotics. Many in this group, including me, use this routine. I stopped antibiotics after 18 months, while I still had positive cultures, but fewer lesions in my lungs. That was over w years ago. After about a year I regained most of my lost weight and energy, reduced coughing, and have had one exacerbation that required treatment. I still am short of breath and have to be careful to stay healthy and get enough rest.

You might want to search this site for 7% saline and learn how some of us manage.

Also would you consider asking for a new CT before seeing the pulmonologist in June to see if your lungs are changed?
Sue

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