Long-term Antibiotics for Bronchiectasis & MAC

Posted by pejohnston @pejohnston, Feb 26, 2018

Diagnosed w/Bronchiectasis in 2008, MAC in 2011 and have been on many medications since then. Under control for several years, but reinfected a couple of years ago while on antibiotics. My body became somewhat immune to some of meds I was on. I am now taking several more drugs that have pretty significant side affects. Fortunately, I’ve been okay with them. Anyone else been on antibiotics for this length of time?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Hi @pejohnston, Welcome to Connect. I modified the title of the discussion you started to distinguish it from the other discussions about antibiotics. I called it "Long-term Antibiotics for Bronchiectasis & MAC" to align with the question you asked to find out if other members have been taking antibiotics for an extended period of time, namely years.

You may also be interested in reviewing these discussions:
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Treatment Option https://connect.mayoclinic.org/discussion/treatment-option/

I'm also tagging @irene5 @sophie1019 @dmarks and @jenblalock on this discussion to share their experiences.
PEJohnston, do you tolerate the antibiotics well?

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@pejohnston , Hello, and welcome to the Connect community. Do you have a a first name that you would like to use? To answer your question about long term antibiotics; you will see that many of our members are on a long term regimine. Most that are taking antibiotics are taking the 'Big 3' cocktail. People usually are on them anywhere from 18 months to 3 years. I am on a different kind of ongoing regimine. I have been taking alternating singular antibiotics on alternating months. I have been doing this since 2013. It is known as a prophylactic approach. My doctor explained that he liked this approach because it is more tolerable for the organs and prevents the mac from becoming resistant to the antibiotics.

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Which antibiotics are they? Have your CT's been stable?

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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I am going to the University of Michigan late this afternoon. I have had so many meds that I will make sure I send the correct info back to you this evening. I have been diagnosed years ago with sarcoidosis of lungs and eyes. Does any one have this diagnosis as well?

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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My husband does! He has that, and I have the MAC. We both have bronchiectasis.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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Wow – What a coincidence. My husband is well physically.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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I volunteered at a Reserve Center when he was called to active duty and people there had caught some rare diseases.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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Yes! We are quite the pair!

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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@macjane, Hi. My cousin has sarcoidosis. She has it in her lymph glands, lungs and stomach. She was also diagnosed with breast cancer nine months ago. Some kind of aggressive form.

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Sarcoidosis travels all over. I am so sorry to hear about her breast cancer. I am off to my doctor now but if you think you might want to talk to me this evening please don't hesitate. What a terrific job Terri M is doing with this support group.

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