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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ling123 | @ling123 | Dec 30, 2017
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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@trissi No, I live in Wisconsin. My doctor works for the Pulmonary Clinic at the University Hospital here in Madison, Wisconsin.

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Sophie | @sophie1019 | Dec 30, 2017
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.

Jump to this post

@ling123 hi I also live in Wisconsin and I see an I'd doc. I am on all kinds of med which includes an iv....

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loveblue | @loveblue | Jan 8, 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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Ling, my doctor at National Jewish is monitoring the development. She said if the MAI load in the sputum sample was 50 and under for Mai/Mac that she would NOT recommend the big three at this time. I have 0 symptoms but there is a lot of progression over the past three years with more nodules and spreading.

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ling123 | @ling123 | Jan 8, 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.

Jump to this post

@loveblue So sorry to hear that your lung condition is progressing toward the wrong direction. I'm not a doctor, so I don't really know the specifics of test results. But I do know that whether one has symptoms is not a yardstick for judging whether one's condition is worsening. However, truth be told I don't really know what the symptoms are for MAI/MAC. I was diagnosed with MAC 3 years ago after coughing up large amount of blood. But I have not done that since and have not take a sputum test since the initial diagnosis. I do have excessive mucus and cough quite a bit. But as I understand it, that is more of symptoms of bronchiectasis, not MAI/MAC. I have had many chest X-rays and gone through a series of lung functioning tests. All tests so far have suggested that my lung conditions are stable and slightly improving. Have you discussed with your doctors about the indications of all of the things you mentioned: MAI load in sputum samples below 50, yet more nodules in your lungs and spreading?

REPLY
ling123 | @ling123 | Jan 10, 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.

Jump to this post

@trissi My philosophy is this: the purpose of taking the medication is to make our conditions better, or at least to prevent them from getting worse. If my conditions continue to deteriorate and the only thing that can stop the slipping slope is these antibiotics, then I would be a fool not to take them. But I don't believe these drugs will completely eradicate the bugs anyway. Even if they do, it will most likely be temporary. Because there is always the danger of being re-infected, especially for those of us who have bronchiectasis. In the meantime, the drugs will be wreaking havoc in our bodies and potentially damaging other organs. For this reason, I'm convinced that while the conditions of my lungs are stable and slightly improving, even though I have no idea if I'm still positive for MAC or not, it is better for me not to take the drugs but keep the option open and be watchful and vigilant for signs of future infections.

REPLY
ginak | @ginak | Jan 13, 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.

Jump to this post

@ling123 I agree 100%. I, also, have no symptoms so I'm taking the wait, and watch, and see approach also. Doing all I can to keep my lungs clear.

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Jen_b | @jenblalock | Jan 14, 2018

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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2 replies
Jo Ann K | @jkiemen | Jan 15, 2018

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

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3 replies
Jo Ann K | @jkiemen | Jan 15, 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.

Jump to this post

I have always wondered if I would have taken them sooner if it would have been easier to eradicate.

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Jen_b | @jenblalock | 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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Hi @jkiemen Not sure if you were addressing question to me but I was also on IV amikacin and then inhaled amikacin due to cavitary lesions. Oh, and clofazimine because I didn't tolerate Rifampin but then later they tried Rifabutin and I was okay on that My PFT results are always good, maybe because I was a runner for many years. I do get short of breath when working out but I think that has more to do with being out of shape than anything.

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