Discontinuing MAC antibiotics

Posted by Melissa Nelson @melissa08, Aug 6 6:57pm

For those who have been on the horrible 3 MAC drugs plus Amikacin/Arikayce and terminated usage, was it done cold turkey or did you get off them gradually in the way they were introduced?
Asking on behalf of my husband Bruce who is lobbying his ID/Pulmonologist to either suspend the drugs so he can get out from under the side effects for a bit, or end them completely.
On the up side he has had 7 negative cultures and is no longer producing sputum.
Thanks in advance for your responses.
Melissa

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@melissa08 Hi Melissa, I went off cold turkey and it was fine, they are not an addictive drug thank goodness. Heather

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@heathert

@melissa08 Hi Melissa, I went off cold turkey and it was fine, they are not an addictive drug thank goodness. Heather

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Thanks Heather. That's helpful to know.
Keeping our fingers that he can get a break.
Melissa

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@melissa08

Thanks Heather. That's helpful to know.
Keeping our fingers that he can get a break.
Melissa

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Cold turkey! I never had a negative culture, just got to the point where I could no longer tolerate the side effects and my lungs were looking "better".
I have stayed healthy for 20 months now with 7% saline nebs, mucus thinning meds and airway clearance.
Recovery from the side effects took another year, but I began feeling better within about 2 weeks. I don't know if I would ever take the big 3 again…
Sue

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Oh Sue, sorry you had such a difficult time. Seems like my husband is on a similar track. He is in agony with SOB, and now the back pain, lost a ton of weight, and losing faith in the “cure”. I will pass your note along to him, my born in Minnesota guy. Thank you so much, once again.
Melissa

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@melissa08

Oh Sue, sorry you had such a difficult time. Seems like my husband is on a similar track. He is in agony with SOB, and now the back pain, lost a ton of weight, and losing faith in the “cure”. I will pass your note along to him, my born in Minnesota guy. Thank you so much, once again.
Melissa

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Don't get me wrong – my MAC was severe enough that I don't think I had a choice but to do the antibiotics. It's just that our bodies cannot always handle them.
But I also think 7% saline & airway clearance are really a relatively new "key" to keeping the MAC at bay. Maybe the experts will rethink their 12 months with no positive cultures protocol, and look more closely at what is going on in each person's lungs and body.
Sue

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Two of my sisters were on the big three. One of them stopped cold turkey after 18 months due to vision loss. The other one quit at that very time, six months into it. No problem stop being cold turkey.

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Also, I have MAC and my doctor wants me to go on the big three and I am very reluctant.

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I am giving the meds 6 months to show a negative. If no negative I will consider stopping. I am using the 3% and when I asked my ID MD for 7% and he said ask your Pulmonologist. I am sending him a message through Kaiser Portal tomorrow. The SOB, constant coughing, fatigue and back pain is limiting me in all I try to do…

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@lucie0948

Also, I have MAC and my doctor wants me to go on the big three and I am very reluctant.

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Hi Lucie – What are you doing to keep the MAC at bay do you can avoid the Big 3 – like 7% saline nebs, airway clearance, etc.
Sue

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@helenrivera

I am giving the meds 6 months to show a negative. If no negative I will consider stopping. I am using the 3% and when I asked my ID MD for 7% and he said ask your Pulmonologist. I am sending him a message through Kaiser Portal tomorrow. The SOB, constant coughing, fatigue and back pain is limiting me in all I try to do…

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Hi Helen – Are you willing to consider a CT scan to show whether the MAC is receding in your lungs? That is what influenced my decision to stop the antibiotics in favor of 7% saline and other efforts to stay healthy.
Sue

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We are new to this exchange. Diagnosis Bronchiectasis. Does anyone have chronic cough?
Chronic fatigue? How much do these affect your day? The chronic cough is how we got the Bronchiectasis diagnosis but the fatigue has recently taken its toll.

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@sueinmn

Hi Helen – Are you willing to consider a CT scan to show whether the MAC is receding in your lungs? That is what influenced my decision to stop the antibiotics in favor of 7% saline and other efforts to stay healthy.
Sue

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Hi Sue, yes definetly. I am going to ask for one. I am also seriously considering making a appt at the Mayo Clinic. Not quite sure how to go about this or if this as very costly but believe I need a 2nd opinion

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