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pejohnston
@pejohnston

Posts: 3
Joined: Feb 26, 2018

Long-term Antibiotics for Bronchiectasis & MAC

Posted by @pejohnston, Mon, Feb 26 3:37pm

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?

REPLY

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?

@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.

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

@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?

@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.

@jkiemen

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

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

@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.

@jkiemen

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

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Yes! We are quite the pair!

@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.

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.

@jkiemen

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

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Irene, did you or your husband ever work in an older building with unclean air ducts? Jane

@jkiemen

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

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I think my dad had sarcoidosis undetected as he was due for surgery in NY that was put on hold due to a scar on his lungs. Looking back he was an executive with IBM in NYC. He would walk amongst the buildings being erected in the 50's and 60's. Lots of dust…..the scar was not cancer as the surgeon suspected. He was never tested for sarcoid.

@jkiemen

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

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Yes and yes! We are both retired educators! 

@jkiemen

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

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Terri : Look at my responses to Irene. In your cousin's case I wonder if anyone mentioned Achalasia? On the eve of my mother's wake, I suddenly got up, felt like I was going to roll over and faint. I was taken to hospital, admitted and then diagnosed with Achalasia. My doctor at home told me repeated I has Irritable Bowel Syndrome. He was not correct. The bottom muscle area of the esophagus fails to function so surgery is a necessity. The esophagus is cut inserted into the stomach area so food can pass into the digestive system. It was not accepted here by my gastro doctor until he did very extensive testing. I saw it on the x-rays in CT and it was explained that Achalasia is often misdiagnosed as IBS.

@jkiemen

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

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Does anyone else have similar issues but possibly misdiagnosed? My brother is a cardiologist who was puzzled by lack of care. He mentioned sarcoid and he was right.

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