Most people quit their job under Big3?

Posted by maliko @maliko, Nov 12 9:30pm

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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@maliko

Hello. Thanks for your reply. I'm currently in hawaii and even thinking of relocating to california as I have family there. Are there any reputable pulmonologist in california who specializes in mac treatment? Thank you

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National Jewish Health in Denver will have the best pulmonologists. My understanding is that if you have an in-person visit with the MAC Department, you can be treated remotely if you have a pulmonologist that will work with NJH.

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I have not been able to work in over a year already. If it wasn’t for my spouse working, I would be dead. I’ve lost over 100 lbs. Just cannot believe there is no system in place to help someone who has worked all my life. I was supposed to be getting VA benefits but no one wants to help. I can’t even get a #GoFundMe off the ground.
Pharmacist filling my Ethambucol whispered, « You have TB? » Like, no. That is why you do not get access to my records, lady! It’s called NTM & it’s not ‘supposed’ to be contagious.

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I started taking Big 3 several months ago 3x a week (mild bronchiectasis and MAC) no side effects at all and my latest CT scan looked better! 'Overall decreased nodularity' . I too was hesitant (scared, actually) to start the antibiotic regimen, reading about potential side effects.

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