1. < MAC & Bronchiectasis

Big 3 Impact on Daily Energy Levels

Posted by amt005 @amt005, Mar 16 5:30am

I have been diagnosed (high res CT and single sputum) with NTM and very mild Bronchieactesis. I am having a bronchoscopy in a couple of weeks to confirm. I have no symptoms and am 53 and otherwise healthy. This diagnosis was only made following a report of a lung nodule on a CT following an upset stomach. This has been a lot to take in. As I wait for all the results in next 2 months, my biggest concern is how I will feel while taking the standard 3 medicines daily? Is there any information on patient experiences managing the heavy medicinal regime? I hold a demanding job and am concerned about how side effects from the medication might impact my ability to work. Thank you.

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amt005 | @amt005 | Mar 17 7:57pm
In reply to @moonie979 "While there are 3 standard medications, I would know which is being considered standard. I know..." + (show)
@moonie979

While there are 3 standard medications, I would know which is being considered standard. I know that sounds odd but my mom ( I was her caretaker for 5 years) had tried more than just 3. So which 3 are they going to try you on? Azithromycin and Ethambutol didn't cause issues with my mom. Rifampin made her severely nauseous and she couldn't keep food down at all. Also, Rifampin and Rifabutin will cause your urine, stools ,etc to be red(dish) so do not be alarmed. Arikayce nebulizer treatments almost killed my mom as they caused fluid in her lungs and she felt like she was drowning after each use ( I have already many that it's helped though). The Amacaycin shots made her very sick and they hurt her but they helped her after a bit.

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I am not sure yet which medications. I am still waiting for definitive confirmation I guess and am using this time to understand the treatment options to get a sense of which might be more tolerable and equally effective. My mum has been on the standard Big 3 but has just recently started getting balance issues so they have done an MRI and I guess are reassessing the medication.

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moonie979 | @moonie979 | Mar 17 8:45pm
In reply to @amt005 "I am not sure yet which medications. I am still waiting for definitive confirmation I guess..." + (show)
@amt005

I am not sure yet which medications. I am still waiting for definitive confirmation I guess and am using this time to understand the treatment options to get a sense of which might be more tolerable and equally effective. My mum has been on the standard Big 3 but has just recently started getting balance issues so they have done an MRI and I guess are reassessing the medication.

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I hate hearing that about your mom, and you both having to go through treatments. I hate anyone having to deal with MAC because it's such a horrible thing. I will say this. Make sure you can put a bit of weight on before they put you on anything just in case the meds make you start losing it. Keep tolerable snacks and fluids near too.

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amt005 | @amt005 | Mar 18 4:37am
In reply to @moonie979 "I hate hearing that about your mom, and you both having to go through treatments. I..." + (show)
@moonie979

I hate hearing that about your mom, and you both having to go through treatments. I hate anyone having to deal with MAC because it's such a horrible thing. I will say this. Make sure you can put a bit of weight on before they put you on anything just in case the meds make you start losing it. Keep tolerable snacks and fluids near too.

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Actually losing some weight might be the only upside! Provided it’s not muscle. Bright side and all that 🙂

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moonie979 | @moonie979 | Mar 18 6:48am
In reply to @amt005 "Actually losing some weight might be the only upside! Provided it’s not muscle. Bright side and..." + (show)
@amt005

Actually losing some weight might be the only upside! Provided it’s not muscle. Bright side and all that 🙂

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My mom got down to 89 lbs. She started out at 120ish, the most weight she's ever had on her other than all her pregnancies. She couldn't eat any meat because she said it tasted like a dead animal smells, rotten. I made sure she had a lot of fruits and veggies, protein shakes and she was a snacker. She was always eating.lol. she still lost it.

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oma5 | @oma5 | Mar 18 10:08am

I’m new to BE. What are the Big 3. My dr currently has me on Breztri twice daily

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hille2 | @hille2 | Mar 19 6:55pm

I was diagnosed with MAC about 3 years ago. Don't know how long I've had it. It was found by accident when I had a CT scan for a GI issue.

I have multiple nodules but absolutely no side effects. My doctors do not want to put me on the antibiotics treatment due to the fact that I have no symptoms. I am under the care of a Nodule Center at a major teaching hospital . They have been following me very closely and the pulmonologist and ID doctor do not want to put me on the antibiotic treatment at this time.

Make sure you do your research before starting any treatment with antibiotics. The treatment is worse than the disease.

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rmason | @rmason | Mar 20 12:12pm
In reply to @oma5 "I’m new to BE. What are the Big 3. My dr currently has me on Breztri..." + (show)
@oma5

I’m new to BE. What are the Big 3. My dr currently has me on Breztri twice daily

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The three antibiotics are typically a macrolide, ethambutol, and rifampin.

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circleup | @circleup | Apr 9 8:32am

GOt dx a year ago MAC/MAI, been on daily treatment. This whole past year has just been exhausting for me. I have adverse effects from the rifampin, that no one takes seriously. I feel no better and no worse. Xrays are messy, CT scans show no improvement. No cough, no sputum, breathing okay. . . . just no energy. i am ready to give up. My doctors seem to have extremely limited clinical experience with MAC, that seems odd to me.

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