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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 27, 2017

Hi Trissi,
I moved your message to the MAC & Bronchiectasis where you'll get more response to your MAC-specific questions. I completely understand that you have chosen to start taking the prescribed antibiotics for a few days to enjoy the holidays. Typically it is advised to not drink alcohol while taking any kind of antibiotic. See https://www.drugs.com/article/antibiotics-and-alcohol.html "In general, drinking any amount of alcohol while fighting an infection may not be wise, as it can lead to dehydration, interrupt normal sleep, and may hinder the body’s natural ability to heal itself. Also, some antibiotics have a specific -- and sometimes very dangerous interaction -- with alcohol."
I'm tagging a few other members to weigh in @windwalker @tdrell @ling123 @heathert @lindam272 and @joan912

Trissi, you also asked about specialists in Arizona. Please see these discussions
- Physician recommendation - Arizona Mayo Clinic https://connect.mayoclinic.org/discussion/physician-recommendation-arizona-mayo-clinic/
- MAC & Bronchiectasis https://connect.mayoclinic.org/discussion/good-mai-diagnostictreatment-facilities/

You'll also want to follow these discussions to learn more about managing side effects and getting a second opinion.
- Have to start the big three https://connect.mayoclinic.org/discussion/have-to-start-the-big-three/
- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

When were you diagnosed with MAC?

REPLY
1 reply
trissi | @trissi | Dec 27, 2017
In reply to @colleenyoung "Hi Trissi, I moved your message to the MAC & Bronchiectasis where you'll get more response..." + (show)
@colleenyoung

Hi Trissi,
I moved your message to the MAC & Bronchiectasis where you'll get more response to your MAC-specific questions. I completely understand that you have chosen to start taking the prescribed antibiotics for a few days to enjoy the holidays. Typically it is advised to not drink alcohol while taking any kind of antibiotic. See https://www.drugs.com/article/antibiotics-and-alcohol.html "In general, drinking any amount of alcohol while fighting an infection may not be wise, as it can lead to dehydration, interrupt normal sleep, and may hinder the body’s natural ability to heal itself. Also, some antibiotics have a specific -- and sometimes very dangerous interaction -- with alcohol."
I'm tagging a few other members to weigh in @windwalker @tdrell @ling123 @heathert @lindam272 and @joan912

Trissi, you also asked about specialists in Arizona. Please see these discussions
- Physician recommendation - Arizona Mayo Clinic https://connect.mayoclinic.org/discussion/physician-recommendation-arizona-mayo-clinic/
- MAC & Bronchiectasis https://connect.mayoclinic.org/discussion/good-mai-diagnostictreatment-facilities/

You'll also want to follow these discussions to learn more about managing side effects and getting a second opinion.
- Have to start the big three https://connect.mayoclinic.org/discussion/have-to-start-the-big-three/
- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

When were you diagnosed with MAC?

Jump to this post

Hi, Colleen! Thank you so much for all of the resources! I feel like I am part of the group already! I was diagnosed in November. Back in April, my chest CT showed many lung nodules and I was first checked for lung cancer. Then the pulmonary doctor did a Bronchoscopy and it showed I had Pseudomonas Aeriginosa (sp?). I was on a pic line for 2 weeks and a follow up x ray showed it was gone. As the culture continued to develop, Micobacterium Avium Complex was finally diagnosed. I am thankful to have found this forum!.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 27, 2017

@trissi , Hello Trissi, welcome to our forum. I am glad that you found us. As Colleen has stated, alcohol and antibiotics do not go well together. I was always told that alcohol can kill the antibiotic's effectiveness. Another thing to consider is that the BIG 3 antibiotics can be hard on the liver, that is why they do routine liver function tests on you while taking them. You wouldn't want to tax the liver further with alcohol added to the mix. You are lucky in that you live not too far from the Mayo Clinic there. Have you considered being seen there?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 28, 2017

@trissi Trissi, I hope you will take the time to read over older posts, especially those by @katemn, she had lots of good info. Also, I recommend that you Google all that you can on the subject of avium bacterium and pseudomonas. Knowledge is power. Do you know if you also have a condition/disease called bronchiectasis? It commonly goes hand in hand with MAC infections. Feel free to ask questions or share your experiences.

REPLY
1 reply
Barb | @1065408 | Dec 28, 2017

Hi All. My name is Barbara and I was diagnosed with Mac and bronchiectasis in April. I have not started any treatment because unfortunately I am allergic to numerous antibiotics and have not had an antibiotic in 35 years. Currently my treatment includes mucinex and a medical device called a flutter which vibrates the bronchial tubes in an effort to loosen the congestion. A CT scan after six months indicated no change. I’m hoping it never gets any worse. Except for the coughing I don’t feel badly. The shortness of breath is predicated on my activity level. As much as I would like to treat this, I’m just not normal. Nice to know the group is available.

REPLY
ling123 | @ling123 | Dec 28, 2017

@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.

REPLY
18 replies
Barb | @1065408 | Dec 28, 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

Thank you ling123 for your insights. Definitely helpful to know you’re not alone.

REPLY
ling123 | @ling123 | Dec 28, 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

@1065408 You are right, Barbara. I don't share all the experiences with all the people on this site, but we are all here to support each other the best we can. Coming here to read everybody's postings, even though I can't relate to many situations that people describe, makes me feel that I'm not alone. And I would like to do my part to make other people feel the same.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 28, 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, Ling, you have been a wonderful contributor over the past year. I, for one, really appreciate it.

REPLY
Barb | @1065408 | Dec 28, 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

Thank you. It’s so helpful and encouraging to me.@1065408

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