Big 3 all at same time?

Posted by winema @winema, Jun 15 7:38pm

I'm starting the "big 3" soon and am curious about 2 things. One is about taking all of the meds at the same time (say a couple hours after evening meal)--for me, that's one azithromycin, 2 rifampin, and 4 (400mg) ethambutol. Who has success with that schedule, is that what your doc recommends? I picked up the drugs today, and got no guidance about that from my doc and didn't know to ask the pharmacist. Second question: I read that for my weight (about 55 kg), and taking meds 3x/week, I should be starting with 1200 mg of ethambutol. But doc has prescribed 1600; seems like a lot, given the risk of optical neuritis. I'm not going to start taking anything until I've had base line blood work done (in 2 days) and have my questions answered. I think patient experience is really important and value any input from folks here. Thanks!

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

I was diagnosed with MAC in March,I have been on the antibiotics for about 5 weeks, 3 times a week. So far no drug reactions. I am feeling better, and have a blood draw to check levels and also a sputum test this week. Looks like a long journey
Dean H

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@deanh

I was diagnosed with MAC in March,I have been on the antibiotics for about 5 weeks, 3 times a week. So far no drug reactions. I am feeling better, and have a blood draw to check levels and also a sputum test this week. Looks like a long journey
Dean H

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Good news that you have had no adverse reactions, and are feeling better! Good luck.

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@deanh

I was diagnosed with MAC in March,I have been on the antibiotics for about 5 weeks, 3 times a week. So far no drug reactions. I am feeling better, and have a blood draw to check levels and also a sputum test this week. Looks like a long journey
Dean H

Jump to this post

Hello, and welcome to Mayo Connect and our MAC & Bronchiectasis support group.

Have you also been diagnosed with Bronchiectasis, COPD or another lung disorder? Did anyone talk to you about doing airway clearance to aid in eliminating mucus?

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@sueinmn

Hello, and welcome to Mayo Connect and our MAC & Bronchiectasis support group.

Have you also been diagnosed with Bronchiectasis, COPD or another lung disorder? Did anyone talk to you about doing airway clearance to aid in eliminating mucus?

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I had a bronchoscopy, was diagnosed with MAC
I have been using a nebulizer morning and evening, this has been very helpful, using a 3 percent saline solution
The Aerobika has not seem to make a difference

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@deanh

I had a bronchoscopy, was diagnosed with MAC
I have been using a nebulizer morning and evening, this has been very helpful, using a 3 percent saline solution
The Aerobika has not seem to make a difference

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If the Aerobika does not help, there are other methods of airway clearance. Here is an excellent video by Dr Pamela McShane, one of the experts in the field.

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@pfurcht123

Hi W, I am just finishing a year of the big 3. I have been on them for one year , daily doses of 250 azythro, 400 rib and 1200 Ethambutol. Based on my reading here, it seems there is a large range of
Doses and frequencies that ID dr recommend . Not
One set Protocol. I don’t know why…. Maybe research has not discovered the magic numbers??? The drs weren’t much help with side effects. They minimised or ignored them , their goal was keeping me on meds for a year to wipe
Out the MAC. It seems
To have accomplished that but I had to find my own optimal way to administer meds. For me , nite time worked best. I don’t know if there is any magic to the timing or the frequency, but this blog was the best support and f/b to get thru this treatment. So in 2 weeks I get to stop the meds. Yay! The opacities have cleared, still some
Scarring from 8 months straight of Pnuemo but
Voila! I have been cleared. Fingers crossed
For the future.

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Wow. I’m so happy for you and so good to hear a success story. I am getting ready to start and terrified.

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@shelly61

Wow. I’m so happy for you and so good to hear a success story. I am getting ready to start and terrified.

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Shelly, I was wary and scared, too. I've just finished my 2nd week (3x/wk) of the meds and, so far, so good. No adverse effects at all (except for the bright orange pee!). For me, after having this question--to treat or not to treat--on my mind for nearly 14 years, it's a relief to be doing something about it. With time, I may experience side-effects, but I'm feeling hopeful and reasonably confident that won't be the case. May you have a similarly good beginning!

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