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.

@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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You're very welcome, Laurie. I'm glad that I was able to connect you with fellow Canadians.
While some information is better shared by private message, I would also like to remind everyone of the benefit of sharing in the forum. By posting in the discussions in the MAC group you benefit from the knowledge and experience of many. In fact it was by sharing in the group that I was able to connect you with other Canadians. That's the beauty of online communities like this one. 🙂

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@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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@colleenyoung yes I do appreciate that very much. I will keep that in mind.

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@jkiemen

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

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@macjane, it is funny you should say that about diagnosing Sarcoidosis. In my cousin's case, I suggested she may have sarcoids 8 months prior to three doctors she had seen who couldn't figure it out. She finally went to a specialist at UCLA and had it diagnosed. I guessed that is what it was because I had been on auto–immune sites for years trying to figure out my own illness. Many of her symptoms matched with what I had read.

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@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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@lauriefrancis Hi. Just checking in. Did your mom's doctors figure out what was causing her stomache issues?

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@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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@irene5 Hi Irene! Have you been able to gain back SOME weight at all? Do you feel like you are doing any better?

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@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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@lauriefrancis That makes me so angry that doctors don't explain much about a disease. I was told 15 yrs ago that I had bronchiectasis, but not a peep about how to take care of it or how serious it can be. It wasn't until I started going to the Mayo Clinic that my condition was thoroughly explained and properly treated. If there is any way to get her to the Mayo in Rochester, Mn. I'd do so. I know she needs her passport, etc. It sounds like they do not know much about it up your way.

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@windwalker

@macjane, Thank you so much for the kudos. It is nice to get those.

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@macjane, Hello Jane. Did you ever get this question answered? For some reason I am just now seeing this. I think our posts have been getting scrambled.

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Does anyone have a suggestion on a probiotic dr told me to take one

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@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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Hi flib
Good to hear your report. I'm not much younger than you, have had bronchiectasis 24 years & MAC which probably started during the last 10 – now with seemingly chronic sweats – AM &/or during the day. I go out to do errands & a volunteer shift in a garden (the outdoors! the outdoors!) despite that. I've read so much about the benefits of salt for lungs e.g. how salt miners in Eastern Europe not only didn't contract pulmonary ailments as miners normally do over time, but had healthier lungs than everyone else. I've postponed using nebulized salt solution because I've been on a homeopathic protocol & assumed (!) it wouldn't b good idea to do both at same time. I'm now motivated to find out, thanks to your reminder. – I think I'm alessandre on this site & think healing on inspire (site).

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I was taking three drugs to combat this disease: Ethambutol, Riflaxin, and Cipro. every other day, (3 days), no weekends. Like clockwork,
I would expell it all about 2 hours later. My doctor told me to stick with the regimen. Was also on Prednisone for R/A. I got tired of vomiting and was losing weight. I made the decision to stop all the drugs. Am now taking 13 mg. of Prednisone a day and it keeps me comfortable. In addition. am taking 2mg. of Sulfasalazine twice a day for the rheumatoid arthritis. No vomiting and no arthritic pain I walk for 30 minutes each day & do moderate exercises, nothing strenuous. I am in my eighties, live alone, do my own cooking. When I feel good I tend to do too much, which causes painful flare-ups. I have to remember to take it easy & keep it simple.

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@pejohnston, I have been on antibiotics since 2013. I am not on any of the strong 'Big 3', but take alternating monthly meds. My doctor says that I will likely have to be on them indefinitely. They are to act as a prophylaxis (preventative). He explained to me that bronchiectasis lungs are diseased and cannot fight off mycobacteriums; mainly because the lungs inside have malformations from scar tissue from infection, and some cavities (for some). These things trap mucous and bacteria causing a breeding ground. On one of my alternating months I only take cipro for ten days, so it is not a major inconvenience for me.Plus, that leaves me 20 days to take probiotics to put the good bacteria back in my gut. Do you mind sharing what drugs you had been taking that you became resistant to? And what you are on now? Thank you in advance. -Terri

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@hallann

Does anyone have a suggestion on a probiotic dr told me to take one

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@hallann, @nick52 has a good source for probiotics. Also, consider 'Kefir milk'. It is kind of like liquid yogurt and full of live probiotics.

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