1. < MAC & Bronchiectasis

Questions about treatment, alcohol and doctors in Phoenix

Posted by trissi @trissi, Dec 27, 2017

Hi, I am new to the group. I have been to the ID doctor and was prescribed Rifampin at 300mg, Aziithromycin at 500mg, and Ethambutol, at 400mg. I have not started any of them since I was told by the doctor not to drink alcohol at all while taking them and I wanted to enjoy the holidays! There is no warning on any of the vials to avoid alcohol. What are you guys being told? Also, is it true that, for the most part, the oral meds are the only way to go. I am concerned about the side effects. Did any of you get a second opinion on the treatment? If so, can you recommend anyone in the Phoenix area? I was diagnosed with MAC only. Thanks for any input!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 15, 2018
In reply to @jenblalock "Hi. I love wine but didn't like the taste of it or any other alcohol when..." + (show)
@jenblalock

Hi. I love wine but didn't like the taste of it or any other alcohol when I was on meds so that may solve that problem for you. I did get a second opinion but it was after starting meds because I was pretty sick at first. I went to National Jewish Health in Denver. I'm located in South Carolina but brother lives in Denver so I had a place to stay. They do a very thorough evaluation and if you should choose to go there, you will have all of your questions answered. My medical insurance covered most of it. It's a one to two week program. Best to you on this journey and I hope it's a quick one until you are off meds. I was on mine for 15 months which is considered the minimum and it was well worth it. Although I will always have bronchiectasis and some other lung issues so need to be careful with exposure to germs, etc. I no longer cough and feel quite good.

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@jenblalock, Hi Jen. I didn't know you lived in S.C. I do too. What part of the state do you live in?

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Jen_b | @jenblalock | Jan 15, 2018
In reply to @jenblalock "Hi. I love wine but didn't like the taste of it or any other alcohol when..." + (show)
@jenblalock

Hi. I love wine but didn't like the taste of it or any other alcohol when I was on meds so that may solve that problem for you. I did get a second opinion but it was after starting meds because I was pretty sick at first. I went to National Jewish Health in Denver. I'm located in South Carolina but brother lives in Denver so I had a place to stay. They do a very thorough evaluation and if you should choose to go there, you will have all of your questions answered. My medical insurance covered most of it. It's a one to two week program. Best to you on this journey and I hope it's a quick one until you are off meds. I was on mine for 15 months which is considered the minimum and it was well worth it. Although I will always have bronchiectasis and some other lung issues so need to be careful with exposure to germs, etc. I no longer cough and feel quite good.

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@windwalker We are currently in Mount Pleasant but moving to Greenville this spring. Where are you?

REPLY
Jo Ann K | @jkiemen | Jan 15, 2018
In reply to @jkiemen "That sounds wonderful!!! Did they do anything else besides the antibiotics" + (show)
@jkiemen

That sounds wonderful!!! Did they do anything else besides the antibiotics

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I had the opposite effect. Rifabutin caused total body aches and I can take Rifampin. I did allot of exercising as well. Maybe too much. Maybe it compromised my immune system. I guess none of us ever know the exact time and way we contracted the condition,

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Jen_b | @jenblalock | Jan 16, 2018
In reply to @jkiemen "That sounds wonderful!!! Did they do anything else besides the antibiotics" + (show)
@jkiemen

That sounds wonderful!!! Did they do anything else besides the antibiotics

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@jkiemen Never know which meds are going to agree with us. I doubt your exercise hurt you at all. Time for me to get back in shape since I'm off meds. I put on 20 pounds once I got off meds and I did not need them. Weight was perfect when on meds. Food tasted weird and my appetite was low.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 16, 2018

@jenblalock , We are next to Hilton Head, in Bluffton. So, I am about 2 hrs south of you. I was just up there two wees ago. Are excited to move to Greenville?

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1 reply
Jen_b | @jenblalock | Jan 17, 2018
In reply to @windwalker "@jenblalock , We are next to Hilton Head, in Bluffton. So, I am about 2 hrs..." + (show)
@windwalker

@jenblalock , We are next to Hilton Head, in Bluffton. So, I am about 2 hrs south of you. I was just up there two wees ago. Are excited to move to Greenville?

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That's a pretty area. Yes. Very excited to move to Greenville. Our daughter's family is moving there from up north so it will be great to be near her and the grandkids.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2018

@jenblalock, I would give anything if my daughter would move to where I live. I shouldn't move her way due to the fact that I get sick often in Virginia, could be the climate, but I suspect higher organism count; mold etc. How old are your grandkids? Sounds like you are headed for bliss!

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11 replies
Jen_b | @jenblalock | Jan 17, 2018
In reply to @windwalker "@jenblalock, I would give anything if my daughter would move to where I live. I shouldn't..." + (show)
@windwalker

@jenblalock, I would give anything if my daughter would move to where I live. I shouldn't move her way due to the fact that I get sick often in Virginia, could be the climate, but I suspect higher organism count; mold etc. How old are your grandkids? Sounds like you are headed for bliss!

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@windwalker I know what you mean. It's been 18 years since I lived near my daughter or son. They currently live in northern Illinois. I get sick every time I go up there but that could just be because of the airplane or sick kids in the winter. We have four grandkids. The two that are moving to Greenville are 7 and 4. The two that will stay in Illinois are 10 and 7. Do you have any grands?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2018
In reply to @ling123 "@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up..." + (show)
@ling123

@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up a large amount of blood. I have opted not to take the "big three" antibiotics because my pulmonary doctor didn't think my condition was bad enough to warrant the risk of damages to my other organs with long-term drug treatment. Just like you, other than coughing and excessive mucus, I feel very normal. And my chest X-rays do not show any worsening of my lung conditions. And I have no breathing problems either. So my decision is to diligently keep an eye on the conditions of my lungs. As long as they are stable, no drugs. In fact, I've not gotten any medical treatment and the last chest X-ray actually showed some improvement in my lungs. In this group, there are people who have been treated with the "big three" and others have not or have stopped taking them after a period of time. So it is not mandatory that everybody with bronchiectasis and MAC absolutely has to be on the 3 major antibiotics. It all depends on whether one's conditions warrant them. Let's hope your conditions will be stable for the foreseeable future so you can get on with your life without much concern.

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@jkiemen , I often second guess my choice to decline treatment in 2005 myself. Two out of three doctors said they would not recommend going on the big three, so I didn't.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2018
In reply to @windwalker "@jenblalock, I would give anything if my daughter would move to where I live. I shouldn't..." + (show)
@windwalker

@jenblalock, I would give anything if my daughter would move to where I live. I shouldn't move her way due to the fact that I get sick often in Virginia, could be the climate, but I suspect higher organism count; mold etc. How old are your grandkids? Sounds like you are headed for bliss!

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@jenblalock, Ahhhh....7 and 4 are such adorable ages. I know that you will love having them around. No, I do not have any grandchildren I have only one beautiful daughter who has opted to not have any children. Unfortunately, she has bi-polar disorder and does not want to possibly pass that on to any off-spring. I have made my peace that I will never experience being a grandmother.

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