Starting MAC treatment with "big three" drugs: What to expect?

Posted by ritapearl @ritapearl, Oct 24, 2021

I am beginning the “big three” therapy what should I expect?

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

Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the members here to be very helpful and encouraging as you begin this journey. It may seem scary at first if you have read anything about the drug therapy, but feel free to ask any questions as they come up, and someone will try to answer.
Here is a recent discussion about the medications: https://connect.mayoclinic.org/discussion/drug-therapy/
and a little older one: https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/

A very little about my experience – When I started the medications, the pulmonology nurse suggested I start with one for the first 3 doses, add a second for the next three doses, and finally the third at 2 weeks. This gave my body a little time to acclimate. I struggled a lot with nausea from the meds, and finally figured out it helped to take all 3 at bedtime with a small snack. That way I slept through the worst queasiness. Maybe not ideal, again the wise nurse "the most effective medication is the one you take every time." I also had appetite and weight loss issues, and supplemented with protein shakes and homemade fiber and vitamin rich smoothies.

Can you tell me a little about what led to your diagnosis and the prescription for the "Big 3"?
Sue

REPLY
@sueinmn

Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the members here to be very helpful and encouraging as you begin this journey. It may seem scary at first if you have read anything about the drug therapy, but feel free to ask any questions as they come up, and someone will try to answer.
Here is a recent discussion about the medications: https://connect.mayoclinic.org/discussion/drug-therapy/
and a little older one: https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/

A very little about my experience – When I started the medications, the pulmonology nurse suggested I start with one for the first 3 doses, add a second for the next three doses, and finally the third at 2 weeks. This gave my body a little time to acclimate. I struggled a lot with nausea from the meds, and finally figured out it helped to take all 3 at bedtime with a small snack. That way I slept through the worst queasiness. Maybe not ideal, again the wise nurse "the most effective medication is the one you take every time." I also had appetite and weight loss issues, and supplemented with protein shakes and homemade fiber and vitamin rich smoothies.

Can you tell me a little about what led to your diagnosis and the prescription for the "Big 3"?
Sue

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Sue since I am a beginner I don’t know if you received my response to you.forgot to add names Ethanbutol ,Azithromycin, Rifamapin

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@ritapearl

Sue since I am a beginner I don’t know if you received my response to you.forgot to add names Ethanbutol ,Azithromycin, Rifamapin

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Sorry, your reply did not come. Be sure to click "reply" type in the comment box, then click "Reply" again. I often have the issue if I get distracted or try to do too many things at once!
Sue

REPLY

I am on the second month of “The Big Three” so far except for a little stomach issue I am doing great I take the Azithromycin and the Ethambutol as soon as I wake up then eat at least an hour later, then I take the Rifampin before bed at least 2 hours after eating, I take 1-2 probiotics a day when I remember and a multivitamin at lunch

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@ritapearl

Sue since I am a beginner I don’t know if you received my response to you.forgot to add names Ethanbutol ,Azithromycin, Rifamapin

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About 3 years ago sitting in a restaurant I brought up blood.Went to a recommended pulmonologist at Mt Sinai Manhattan,took cat scan and other tests and was diagnosed with bronchiectasis.Started using Aerobika with 3% saline.Important I had NO symptoms.two years later tests taken at university Newark medical center corroborated MAC. Put on vest and nebulizer twice a day,now big three.

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@sueinmn

Sorry, your reply did not come. Be sure to click "reply" type in the comment box, then click "Reply" again. I often have the issue if I get distracted or try to do too many things at once!
Sue

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Thanks,I responded now

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@shur61

I am on the second month of “The Big Three” so far except for a little stomach issue I am doing great I take the Azithromycin and the Ethambutol as soon as I wake up then eat at least an hour later, then I take the Rifampin before bed at least 2 hours after eating, I take 1-2 probiotics a day when I remember and a multivitamin at lunch

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^ This. Dr Huitt from NJH recommends this very regimen. She said it makes it easy to tease out the root cause of side effects. There's a great NJH video of Dr Huitt discussing the meds and management of side effects.

I've been on the Big 3 for going on 2 months now and have only had intermittent stomach pain within the first couple of hours of taking my morning dose of the A&E. Was preparing for horrific side effects from the Rifampin, but, thus far, have had none (knock on wood).

REPLY
@sueinmn

Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the members here to be very helpful and encouraging as you begin this journey. It may seem scary at first if you have read anything about the drug therapy, but feel free to ask any questions as they come up, and someone will try to answer.
Here is a recent discussion about the medications: https://connect.mayoclinic.org/discussion/drug-therapy/
and a little older one: https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/

A very little about my experience – When I started the medications, the pulmonology nurse suggested I start with one for the first 3 doses, add a second for the next three doses, and finally the third at 2 weeks. This gave my body a little time to acclimate. I struggled a lot with nausea from the meds, and finally figured out it helped to take all 3 at bedtime with a small snack. That way I slept through the worst queasiness. Maybe not ideal, again the wise nurse "the most effective medication is the one you take every time." I also had appetite and weight loss issues, and supplemented with protein shakes and homemade fiber and vitamin rich smoothies.

Can you tell me a little about what led to your diagnosis and the prescription for the "Big 3"?
Sue

Jump to this post

Sue, i havent started the big 3 yet but mine would be 7 pills- all at once? I already have chronic nausea due to gastroparesis

REPLY
@sueinmn

Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the members here to be very helpful and encouraging as you begin this journey. It may seem scary at first if you have read anything about the drug therapy, but feel free to ask any questions as they come up, and someone will try to answer.
Here is a recent discussion about the medications: https://connect.mayoclinic.org/discussion/drug-therapy/
and a little older one: https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/

A very little about my experience – When I started the medications, the pulmonology nurse suggested I start with one for the first 3 doses, add a second for the next three doses, and finally the third at 2 weeks. This gave my body a little time to acclimate. I struggled a lot with nausea from the meds, and finally figured out it helped to take all 3 at bedtime with a small snack. That way I slept through the worst queasiness. Maybe not ideal, again the wise nurse "the most effective medication is the one you take every time." I also had appetite and weight loss issues, and supplemented with protein shakes and homemade fiber and vitamin rich smoothies.

Can you tell me a little about what led to your diagnosis and the prescription for the "Big 3"?
Sue

Jump to this post

Hi Sue, I was diagnosed with MAC lung disease earlier this year. I had an upper left lobectomy in June, mostly because they thought the infection was cancer and also because of the delicate location on my lung. I also had mild bronchiectasis. I have just started the azithromycin and will add rifampin later this week, with ethambutol to follow in two weeks. I am very worried about side effects. I am thinking about retiring (I'm 65) now instead of at age 70 so I can rest more. I am self-employed and really cannot take days off for illness. I'm just hoping the side effects aren't bad but honestly I am "on" and in front of people one-to-one all day for my work and I can't imagine cognitive slips or diarrhea and vomiting working well for me. I'm sure everyone else feels the same. Do I need to take my days and live them because there may be fewer and they'll be more challenging?Thank you, Sue, for moderating, and all for reading.

REPLY
@bestselfever

Hi Sue, I was diagnosed with MAC lung disease earlier this year. I had an upper left lobectomy in June, mostly because they thought the infection was cancer and also because of the delicate location on my lung. I also had mild bronchiectasis. I have just started the azithromycin and will add rifampin later this week, with ethambutol to follow in two weeks. I am very worried about side effects. I am thinking about retiring (I'm 65) now instead of at age 70 so I can rest more. I am self-employed and really cannot take days off for illness. I'm just hoping the side effects aren't bad but honestly I am "on" and in front of people one-to-one all day for my work and I can't imagine cognitive slips or diarrhea and vomiting working well for me. I'm sure everyone else feels the same. Do I need to take my days and live them because there may be fewer and they'll be more challenging?Thank you, Sue, for moderating, and all for reading.

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Thank you for your thoughts. I am also new to this blog and will be going to duke for opinion and discussing starting treatment for mac. Would like to hear from those who have gone through the treatment to learn how difficult it was or did it affect your everyday life. Can you travel or is that something that can be difficult.
I want to hear from you so far from my infectious disease dr its all difficult and terrible. Thank you for any thoughts on this. Miriam

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@msk

Thank you for your thoughts. I am also new to this blog and will be going to duke for opinion and discussing starting treatment for mac. Would like to hear from those who have gone through the treatment to learn how difficult it was or did it affect your everyday life. Can you travel or is that something that can be difficult.
I want to hear from you so far from my infectious disease dr its all difficult and terrible. Thank you for any thoughts on this. Miriam

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Good morning Miriam, you have found a great place to address your concerns here on Connect, since we have so many people who have had every conceivable treatment regimen for MAC. Not every case is immediately treated with antibiotics, some can be managed with rigorous airway clearance and nebulizing 7% saline.
When I first started treatment, I was quite ill with both MAC & pseudomonas, and very scared to begin treatment, then I found this wonderful group. They taught me many strategies for managing the disease and meds, and I got help from my pulmonologist's nurse as well.
Once I felt a little better, I traveled throughout 18 months of treatment with the Big 3, but more slowly due to the fatigue and other side effects. I also continued my volunteer activities, and helping with my small grandson. I can still do all of that with my airway clearance routine – I just need to reserve about 30 minutes once or twice a day to do it.

I am glad you are having a consult at Duke – are you making a list of questions to ask?

Sue

REPLY
@bestselfever

Hi Sue, I was diagnosed with MAC lung disease earlier this year. I had an upper left lobectomy in June, mostly because they thought the infection was cancer and also because of the delicate location on my lung. I also had mild bronchiectasis. I have just started the azithromycin and will add rifampin later this week, with ethambutol to follow in two weeks. I am very worried about side effects. I am thinking about retiring (I'm 65) now instead of at age 70 so I can rest more. I am self-employed and really cannot take days off for illness. I'm just hoping the side effects aren't bad but honestly I am "on" and in front of people one-to-one all day for my work and I can't imagine cognitive slips or diarrhea and vomiting working well for me. I'm sure everyone else feels the same. Do I need to take my days and live them because there may be fewer and they'll be more challenging?Thank you, Sue, for moderating, and all for reading.

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The treatment for MAC is onerous for many people, but if you can stick with it to "knock down" the infection you can have a pretty normal life.
When I was having issues taking the 3 antibiotics, I found several things that helped me cope.
First, nausea was my companion – I learned I could take all 3 meds at night, just before bed, with a small amount of starchy food and go to sleep. While not ideal, it was my best time of day.
Second, my appetite was nonexistent, so I forced myself to eat a tiny amount of high quality food every 1-2 hours (like 1 oz of cheese, 1/4 c of cashews, 1/2 a protein drink)
Third, a good probiotic.

I had a lot of fatigue, so I don't know if I could have managed to work full time, but I did about 3 full days a week between volunteer work and grandchild care. Is there any chance you can cut back on work without retiring?
Sue

REPLY
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