Most people quit their job under Big3?

Posted by maliko @maliko, 4 days ago

Hello member. I just got diagnosed with Mac and so many thoughts are going through my head. My life just turned upside down.
My pulmonologist brought up Big 3 treatment and reading all the horrible side effects, I'm wandering if most people had to quit their job. Thank you

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@suzyqueue

I've been on the Big 3 for 6 years, Inhaled Arikayce for 4 years and recently added Clofazimine. I never had many side effects from any of the medications that prevented me from going to work. Sometimes the symptoms of MAC kept me home a day or so and in my mind I'm thinking how much worse off I'd be had I not been keeping things at bay with the meds.

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What. 6 yrs and 4 yrs. Isn’t arikayce expensive. Your dr is ok with being on antibiotics that long

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@suzyqueue

I've been on the Big 3 every day for 6 years and the Clofazimine every day for a little over a year. I initially started the inhaled Arikayce every day for the first couple years but was able to decrease it to 3 times a week. I also nebulize Levalbuterol then hypertonic saline solution twice a day. I also Mycobacterium Avium Intracellure also. I had a 10 cm cavity grow in my upper left lobe within a month or 2 before starting the antibiotics. Once I started all the meds and up to now, it has shrunk to 4 cm.

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What is clofazimine

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Just an update on my condition. Got report from my second chest scan done today. No abnormality no bronchieactasis nothing. It was same result 7 months ago too. So how is this possible? I cultured mac and my lungs are perfectly normal? I initially thought I had lung cancer but with 2 clean CT scans, I doubt that is the case.
Maybe I don't have mac, I'm so confused

Yet I'm coughing all day and clearing throat with blood in saliva.

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No . I have been on the big 3 in 2018 for two years and worked every day with no problems. Very few side effects.

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@maliko

Just an update on my condition. Got report from my second chest scan done today. No abnormality no bronchieactasis nothing. It was same result 7 months ago too. So how is this possible? I cultured mac and my lungs are perfectly normal? I initially thought I had lung cancer but with 2 clean CT scans, I doubt that is the case.
Maybe I don't have mac, I'm so confused

Yet I'm coughing all day and clearing throat with blood in saliva.

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When were your sputum cultures done? You had at least three done, each a week apart, and two were positive? If the sputum samples were 7 months ago like your last CT I myself would want to repeat them. I have read that you can have MAC without lung damage and I believe I have read some members here comment on having little to no damage on CT. But given the symptoms you are describing, to a novice like myself, that seems curious, and I understand your confusion. I am asymptomatic but my CT’s show quite a bit of damage. And that seems strange to me also. My infection disease doctor says it’s like back pain - the CT is not an accurate barometer for clinical symptoms. Hopefully you can find an NTM expert near you to guide you on this confusing and challenging path.

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@isago

No . I have been on the big 3 in 2018 for two years and worked every day with no problems. Very few side effects.

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@isago did you do big 3 daily or three days a week?

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@bayarea58

When were your sputum cultures done? You had at least three done, each a week apart, and two were positive? If the sputum samples were 7 months ago like your last CT I myself would want to repeat them. I have read that you can have MAC without lung damage and I believe I have read some members here comment on having little to no damage on CT. But given the symptoms you are describing, to a novice like myself, that seems curious, and I understand your confusion. I am asymptomatic but my CT’s show quite a bit of damage. And that seems strange to me also. My infection disease doctor says it’s like back pain - the CT is not an accurate barometer for clinical symptoms. Hopefully you can find an NTM expert near you to guide you on this confusing and challenging path.

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Hello. My cultures were done like 2 months ago and had 2 positives out of 3.
My pulmonologist does somewhat have experience treating mac infection as I live in Hawaii. He himself was shocked too that my ct is clean, despite my symptoms getting worse since my first ct. He was for sure expecting to see something on 2nd ct. But it was clean. Now he wants to do a broncoscopy.
Pulmonologist wants me to start treatment. I'm torn.

Seems like your case is opposite of mine. No symptoms but lot of damage on your ct. Hope your treatment goes well.

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