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 group.

Azithromyacin made me so very sick but I have an allergy and do not want to discourage anyone. Would you share any of the other medicines you have been on? Many thanks.

REPLY
@windwalker

@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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Terri: I spoke to someone yesterday at The Mayo and she urged me to stay in contact with people like you as I have had such a hard time with many antibiotics. I find you as I have mentioned so indeed supportive.

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@macjane

Azithromyacin made me so very sick but I have an allergy and do not want to discourage anyone. Would you share any of the other medicines you have been on? Many thanks.

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I am on no other med. I have recently committed to drinking 6 to 8 glasses of water daily and it seems to help with the bronchiectasis. A lot less coughing. I go to the gym twice a week and when the weather gets a bit better I'll walk a half hour a day.

REPLY
@windwalker

@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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@windwalker888 my mom was diagnosed a year ago with MAC and just recently was put on antibiotics for bronchiectasis. Until I found this site I had no idea what bronchiectasis was.
At the same time the doctor found lung cancer. A small spot upper left lung. That was the surgeon. The specialist to deal with MAC advised against the treatment in lieu of removing the cancer. Mom was 82 at the time of surgery.
She's recovered from cancer surgery. But all the same pains and more, more easily winded – wheezing. Coughing up sputum all day.
She was strong and independent until a year and a half ago.
Now she's pretty much home bound.
Every doctor advises against the tradition big 3 treatment citing the harsh side effects.
I was wondering about your regimen? What is it?

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@jkiemen

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

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Macjane….what you have shared makes me so furious…..my heart goes out to you….I hope you are getting the care you need and are entitled to. Tdrell

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@jkiemen

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

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Mac jane I was told by NJH that I needed to get bed whose head elevates to 30 degrees and also sl at knees. I they tell me that I have had MAC and various other weird bacterium in sputum/lungs as a result of my Gerd…..that the bacterium gets into lung then sputum when I silently aspirate stomach contents which contain the weird bacterium into lungs. Not supposed to sleep on right side or stomach. Have to follow their Gerd diet….page long.
I tried looking for beds a year ago and got really confused……all the options! Would love to hear what others say.tdrell

REPLY
@bschaper2

I need a very firm mattress, too — I put my number at 85, which the installers of the bed were not too thrilled with. Sometimes when I cannot sleep, I put it up to 90. Slant is probably 45 degrees and I use several pillows too, or drop it to about 25/30 degrees and use the wedge, else, go to lounge chair or sofa. Would I spend $4,000 on a bed like this again, maybe not, but I just wanted to sleep in my own bed and went for it! One thing I did not like about Sleep number — the one side deflated–help desk person on phone wanted me crawling around on the floor which I cannot do – this was to test a couple things so the repair person coming out would have the right part. So, they wanted to charge me $180 for the tech to come and I balked and they charged 1/2 – kinda bad for a bed only 5 months old. Let me know if this does not make sense, be glad to explain further.

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Bschaper2….when I looked up Sleep Number online I saw a lot of complaints like yours….why I stopped looking at their beds….wonder about temperapedic brand. I need to study recent consumer report magazine….they did a study on mattresses.
Tdrell

REPLY
@windwalker

@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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I'm eighty-one. I use a nebulizer with a saline solution my doctor prescribed. It really helps. I only did one antibiotic for less than half a year and loss hearing as a result. Amazon has an easy to use nebulizer, Light to hold in the hand and it's quiet. It's an ultra sonic not a compressor. It cost about 26 dollars. I'm also on oxygen at night. A pain in the neck but I'm use to it now and it does make a difference.
I've had mac and bronc since 2010 and I am still functioning. I drive, run errands, visit run my own life. .

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@jkiemen

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

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I had the same reflux advice. I changed my diet,and got rid of the reflux. I sleep on two stacked pillows. I knew I'd get no rest half sitting up. It worked for me.

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@macjane

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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@macjane Hello Jane! Did I ever tell you that my cousin has sarcoidosis? She has it in her lymph nodes, her stomach, and her lungs. She pretty much stays in bed a lot due to lack of energy. Fortunately, she works from home on her laptop (in bed). Sadly, she is battling an aggressive form of breast cancer at this time.

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@jkiemen

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

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I bought a 7” wedge at Bed, Bath & Beyond. I use that and my regular pillow. I’ve read others just put blocks under the legs at the head of their bed to raise it up. I would prefer to do that put I have a 4 poster bed and it wouldn’t work.

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@jkiemen

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

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@macjane I sleep with 3 pillows and on oxygen at night only.

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