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
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
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
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
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.
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
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
^ 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).
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
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
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.
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.
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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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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2 ReactionsSue since I am a beginner I don’t know if you received my response to you.forgot to add names Ethanbutol ,Azithromycin, Rifamapin
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
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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5 ReactionsAbout 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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2 ReactionsThanks,I responded now
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1 Reaction^ 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).
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
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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Like -
Helpful -
Hug
2 ReactionsThank 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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Like -
Helpful -
Hug
2 Reactions