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?

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Ok I feel really stupid for asking this question, but here goes: could having chickens possibly be the source for someone to get MAC? ? I have it, as do two of my sisters. Both of my daughters have many chickens on their properties (for eggs). Could this put them at risk for MAC?

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@lucie0948

Ok I feel really stupid for asking this question, but here goes: could having chickens possibly be the source for someone to get MAC? ? I have it, as do two of my sisters. Both of my daughters have many chickens on their properties (for eggs). Could this put them at risk for MAC?

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Funny you should ask. I had a dinner party last night, a few of my friends keep chickens, so I raised the topic and said I had been advised to avoid them. My friend who has a large flock said he husband, who has numerous lung issues from asthma and his career as a cement contractor, saud he is not allowed near them - his doctors' were adamant. So she asked if she should worry about her health and was told "Only if you have other lung conditions or a compromised immune system that make you susceptible."
Just one point of view - millions of people keep/care for poultry without ever getting MAC.
Sue

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@lucie0948

Ok I feel really stupid for asking this question, but here goes: could having chickens possibly be the source for someone to get MAC? ? I have it, as do two of my sisters. Both of my daughters have many chickens on their properties (for eggs). Could this put them at risk for MAC?

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Just a thought as an engineer. We know MAC is in the soil and in the air.
Could be with a lot of chickens scratching around in the soil, they stir it up.
Harry

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@lucie0948

Ok I feel really stupid for asking this question, but here goes: could having chickens possibly be the source for someone to get MAC? ? I have it, as do two of my sisters. Both of my daughters have many chickens on their properties (for eggs). Could this put them at risk for MAC?

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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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I started the “big three” about 2 months ago and took them at different times until I discovered I COULD take them all together because they did not affect my stomach. No nausea, no pain…I am blessed. One thing I have noticed, and wonder if others have the same issue, I’m tired and not much energy. Is this typical…I am 85, I get I am not a kid anymore but I always did the heavy stuff, vacuuming, carrying 40# sacks of dog food, etc. until all this lung stuff and meds started. I didn’t expect everything to change so drastically, so quickly. Doc did all kinds of blood work, all is well. I’m right in the middle of everything on the tests.
Still coughing up crud, so I know there is still infection in the pockets of my lungs. Not happy about that. I see doc at the end of the month so I have a list of questions. Any thoughts would be appreciated. Thanks all! Mary

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I was never told that one of the big three would affect my sight while another would affect my hearing. My obstetrician knew the one that would affect my sight I didn’t see a doctor to check my hearing. My sight has been affected to a small degree but my hearing has been hugely affected. Get a baseline test for both ASAP! Diana

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@maryjo143

I started the “big three” about 2 months ago and took them at different times until I discovered I COULD take them all together because they did not affect my stomach. No nausea, no pain…I am blessed. One thing I have noticed, and wonder if others have the same issue, I’m tired and not much energy. Is this typical…I am 85, I get I am not a kid anymore but I always did the heavy stuff, vacuuming, carrying 40# sacks of dog food, etc. until all this lung stuff and meds started. I didn’t expect everything to change so drastically, so quickly. Doc did all kinds of blood work, all is well. I’m right in the middle of everything on the tests.
Still coughing up crud, so I know there is still infection in the pockets of my lungs. Not happy about that. I see doc at the end of the month so I have a list of questions. Any thoughts would be appreciated. Thanks all! Mary

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Hello, MaryJo

I am on rifabutin, clofazimine, amikacin and ethambutol, so it's part of the Big 3.
I have noticed extreme fatigue from this regimen, but I think it's mostly the ethambutol. I don't think you're imagining it. The medication is strong, and no doubt can cause fatigue--at least that's what I noticed is listed as side effects for some of these. Are some days worse than others? That's what I noticed. Please drink a lot of water to flush the toxins out and help save your liver and kidney functions. That might also help with the fatigue.

Mokie

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@maryjo143

I started the “big three” about 2 months ago and took them at different times until I discovered I COULD take them all together because they did not affect my stomach. No nausea, no pain…I am blessed. One thing I have noticed, and wonder if others have the same issue, I’m tired and not much energy. Is this typical…I am 85, I get I am not a kid anymore but I always did the heavy stuff, vacuuming, carrying 40# sacks of dog food, etc. until all this lung stuff and meds started. I didn’t expect everything to change so drastically, so quickly. Doc did all kinds of blood work, all is well. I’m right in the middle of everything on the tests.
Still coughing up crud, so I know there is still infection in the pockets of my lungs. Not happy about that. I see doc at the end of the month so I have a list of questions. Any thoughts would be appreciated. Thanks all! Mary

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Well God bless you real well Mary. Tired- fatigued- yes probably from your body fighting it with help from the meds. You are blessed to be able to do so much at 85. You must have great genes ( except for getting MAC)! Wishing you well! Irene5

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@irene5

Well God bless you real well Mary. Tired- fatigued- yes probably from your body fighting it with help from the meds. You are blessed to be able to do so much at 85. You must have great genes ( except for getting MAC)! Wishing you well! Irene5

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Thank you Irene! Yes, I am blessed, truly. I am just not used to having to sit down and rest between chores. I feel as though the weeds in the yard are mocking me now. I used to have them “out of there” before May! Reminds me of the lyrics of a song, “The ole grey mare, she ain’t what she used to be!”
I will just chalk it all up to the infection, body doing its best, and the antibiotics doing their thing.

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@mokie

Hello, MaryJo

I am on rifabutin, clofazimine, amikacin and ethambutol, so it's part of the Big 3.
I have noticed extreme fatigue from this regimen, but I think it's mostly the ethambutol. I don't think you're imagining it. The medication is strong, and no doubt can cause fatigue--at least that's what I noticed is listed as side effects for some of these. Are some days worse than others? That's what I noticed. Please drink a lot of water to flush the toxins out and help save your liver and kidney functions. That might also help with the fatigue.

Mokie

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Mokie, Thank you! I will force water, I am a terrible water drinker. I prefer my water hot, filtered over coffee grounds. Bad, I know, but I do not put any sugar or cream in it. I tried to remember back when I started getting more frequent infections and I thought taking antibiotics always made me tired. Taking the big three is a massive amount so it figures I would be fatigued. 😊😊😊

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