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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.

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deanh | @deanh | Jun 23 3:53pm

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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winema | @winema | Jun 23 4:25pm
In reply to @deanh "I was diagnosed with MAC in March,I have been on the antibiotics for about 5 weeks,..." + (show)
Profile picture for deanh @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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Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 23 7:13pm
In reply to @deanh "I was diagnosed with MAC in March,I have been on the antibiotics for about 5 weeks,..." + (show)
Profile picture for deanh @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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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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deanh | @deanh | Jun 24 6:31pm
In reply to @sueinmn "Hello, and welcome to Mayo Connect and our MAC & Bronchiectasis support group. Have you also..." + (show)
Profile picture for Sue, Volunteer Mentor @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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Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 24 7:49pm
In reply to @deanh "I had a bronchoscopy, was diagnosed with MAC I have been using a nebulizer morning and..." + (show)
Profile picture for deanh @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

Jump to this post

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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Shelly61 | @shelly61 | Jun 26 11:04pm
In reply to @pfurcht123 "Hi W, I am just finishing a year of the big 3. I have been on..." + (show)
Profile picture for pfurcht123 @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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winema | @winema | Jun 27 12:14am
In reply to @shelly61 "Wow. I’m so happy for you and so good to hear a success story. I am..." + (show)
Profile picture for Shelly61 @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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deanh | @deanh | Jun 27 1:58pm
In reply to @sueinmn "If the Aerobika does not help, there are other methods of airway clearance. Here is an..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

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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Well worth watching

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btadavis | @btadavis | Aug 1 4:34pm

I too was just prescribed the same dose and I am 56k

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