1. < MAC & Bronchiectasis

To start or not to start the antibiotics?

Posted by benniej23 @benniej23, Aug 19, 2023

Hello,

I’m a 50 year old female, I was diagnosed with Bronchiectasis last year and MAC a month ago. For about 3 years I haven’t been able to really lay down in certain positions without coughing for 10 minutes. I finally went to have my lungs checked out last year and was diagnosed with Bronchiectasis. My current doc is not at Mayo, but I found this forum because I wanted to hear about others’ experience with the disease.

I’m trying to decide if I should start the antibiotic treatment now. I’m not coughing much these days, I’m eating well and the disease isn’t really interfering with my daily life. My doc said it was fine if I wanted to wait and have another CT in 6 months to see how things are.

I read one of the side effects of one of the drugs is losing color vision and blurred vision. I’ve been profoundly deaf since I was 4.5 years old and it scares me that I might have vision problems from the drugs. Has anyone experienced this? If you stop taking the drugs, does vision return to normal??

I also have acid reflux so I’m worried about how the drugs will affect my gut.

Thanks for any feedback you can give!

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

Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 19, 2023

@benniej23 Welcome to Mayo Connect - we don't care whether you are a Mayo patient or not, all are welcome in out group.

Here are two discussions that may be helpful to you in deciding how to manage your own situation:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
and this one, which we should maybe retitle "Managing MAC without antibiotics":
https://connect.mayoclinic.org/discussion/untreated-mac/
Some of the posts are pretty old, if you would like to see the most recent, there is a box below the initial post where you can select "Newest to Oldest"

As a person with bronchiectasis these past few years, have you started any type of airway clearance? When used with 7% saline nebs, it has helped many people here manage their MAC without antibiotics.
Sue

REPLY
2 replies
benniej23 | @benniej23 | Aug 19, 2023
In reply to @sueinmn "@benniej23 Welcome to Mayo Connect - we don't care whether you are a Mayo patient or..." + (show)
@sueinmn

@benniej23 Welcome to Mayo Connect - we don't care whether you are a Mayo patient or not, all are welcome in out group.

Here are two discussions that may be helpful to you in deciding how to manage your own situation:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
and this one, which we should maybe retitle "Managing MAC without antibiotics":
https://connect.mayoclinic.org/discussion/untreated-mac/
Some of the posts are pretty old, if you would like to see the most recent, there is a box below the initial post where you can select "Newest to Oldest"

As a person with bronchiectasis these past few years, have you started any type of airway clearance? When used with 7% saline nebs, it has helped many people here manage their MAC without antibiotics.
Sue

Jump to this post

Hi Sue!

Thanks for the welcome. The links were very helpful, I had seen the second one earlier before I posted.

I haven’t started any airway clearance. My doctor didn’t mention anything about doing that. Is a saline nebs something I need a prescription for? I can call her office on Monday and ask if she thinks I could benefit from it.

REPLY
1 reply
benniej23 | @benniej23 | Aug 20, 2023
In reply to @sueinmn "@benniej23 Welcome to Mayo Connect - we don't care whether you are a Mayo patient or..." + (show)
@sueinmn

@benniej23 Welcome to Mayo Connect - we don't care whether you are a Mayo patient or not, all are welcome in out group.

Here are two discussions that may be helpful to you in deciding how to manage your own situation:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
and this one, which we should maybe retitle "Managing MAC without antibiotics":
https://connect.mayoclinic.org/discussion/untreated-mac/
Some of the posts are pretty old, if you would like to see the most recent, there is a box below the initial post where you can select "Newest to Oldest"

As a person with bronchiectasis these past few years, have you started any type of airway clearance? When used with 7% saline nebs, it has helped many people here manage their MAC without antibiotics.
Sue

Jump to this post

@sueinmn I just realized that we need to tag people in replies, so I’m tagging you here. Still learning!

REPLY
healthybon | @healthybon | Aug 20, 2023

I just started Ethambutol and Azithromycin. I get my eyes checked by my opthomologist every two months....I also use a book that tests problems with color vision, called, ISHIHARA'S TESTS FOR COLOUR DEFICIENCY CONCISE EDITION 2021 I ordered this on Amazon (I think).....SO I CAN TEST MY EYES DAILY. THE tests the opth does are more extensive. I was concerned about what the drug could do to sight, so this is what I worked out to be able to take it with peace of mind.

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 20, 2023
In reply to @benniej23 "Hi Sue! Thanks for the welcome. The links were very helpful, I had seen the second..." + (show)
@benniej23

Hi Sue!

Thanks for the welcome. The links were very helpful, I had seen the second one earlier before I posted.

I haven’t started any airway clearance. My doctor didn’t mention anything about doing that. Is a saline nebs something I need a prescription for? I can call her office on Monday and ask if she thinks I could benefit from it.

Jump to this post

If you hit reply to answer someone's post directly, you don't need to tag them - the system does that for you.
As for the saline - you can get it directly, online usually, without a prescription if you already have a nebulizer. Otherwise you may need a prescription for the nebulizer.

One thing to remember about MAC is that it is "slow to grow and slow to go" so delaying the onset of antibiotics is usually fine if you have few symptoms. That means wait-and-see is a perfectly reasonable approach.

I too was fearful about hearing and vision issues because I have had t9innitus and mild hearing loss most of my life, and I have glaucoma. Here is what one of our resourceful members has to say about safeguarding her vision while on ethambutol:
"healthybon | @healthybon | 3 hours ago
I just started Ethambutol and Azithromycin. I get my eyes checked by my opthomologist every two months….I also use a book that tests problems with color vision, called, ISHIHARA'S TESTS FOR COLOUR DEFICIENCY CONCISE EDITION 2021 I ordered this on Amazon (I think)…..SO I CAN TEST MY EYES DAILY. THE tests the opth does are more extensive. I was concerned about what the drug could do to sight, so this is what I worked out to be able to take it with peace of mind."

So many good ideas are shared here!
Sue

REPLY
1 reply
benniej23 | @benniej23 | Aug 20, 2023
In reply to @healthybon "I just started Ethambutol and Azithromycin. I get my eyes checked by my opthomologist every two..." + (show)
@healthybon

I just started Ethambutol and Azithromycin. I get my eyes checked by my opthomologist every two months....I also use a book that tests problems with color vision, called, ISHIHARA'S TESTS FOR COLOUR DEFICIENCY CONCISE EDITION 2021 I ordered this on Amazon (I think).....SO I CAN TEST MY EYES DAILY. THE tests the opth does are more extensive. I was concerned about what the drug could do to sight, so this is what I worked out to be able to take it with peace of mind.

Jump to this post

@healthybon that is VERY helpful, thank you for the book recommendation! My doc did say I would have to see an ophthalmologist regularly to make sure my vision is ok. I'm glad your sight is ok so far 🙂

REPLY
benniej23 | @benniej23 | Aug 20, 2023
In reply to @sueinmn "If you hit reply to answer someone's post directly, you don't need to tag them -..." + (show)
@sueinmn

If you hit reply to answer someone's post directly, you don't need to tag them - the system does that for you.
As for the saline - you can get it directly, online usually, without a prescription if you already have a nebulizer. Otherwise you may need a prescription for the nebulizer.

One thing to remember about MAC is that it is "slow to grow and slow to go" so delaying the onset of antibiotics is usually fine if you have few symptoms. That means wait-and-see is a perfectly reasonable approach.

I too was fearful about hearing and vision issues because I have had t9innitus and mild hearing loss most of my life, and I have glaucoma. Here is what one of our resourceful members has to say about safeguarding her vision while on ethambutol:
"healthybon | @healthybon | 3 hours ago
I just started Ethambutol and Azithromycin. I get my eyes checked by my opthomologist every two months….I also use a book that tests problems with color vision, called, ISHIHARA'S TESTS FOR COLOUR DEFICIENCY CONCISE EDITION 2021 I ordered this on Amazon (I think)…..SO I CAN TEST MY EYES DAILY. THE tests the opth does are more extensive. I was concerned about what the drug could do to sight, so this is what I worked out to be able to take it with peace of mind."

So many good ideas are shared here!
Sue

Jump to this post

Oh, good that I don't have to tag people when replying! I don't have a nebulizer so I'm going to call my doc tomorrow morning and see what she thinks about me starting 7% saline nebs.

I'm glad that you didn't experience vision issues, I didn't know there were hearing issues with the drug as well. I guess my doc didn't mention that to me since I already have no hearing 🙂

I saw the other reply, that was very helpful too! I'm going to write down the book recommendation so I have it if I ever start the antibiotics.

REPLY
Rick | @rstel7272 | Aug 20, 2023

Ethambutol can cause color blindness issues in 5% of patients. Once stopped, the color is usually restored.
I was on Ethambutol plus the others for 40 months with regular eye exams and had no issues.
Vision issues from the other drugs are very rare.

REPLY
2 replies
benniej23 | @benniej23 | Aug 20, 2023
In reply to @rstel7272 "Ethambutol can cause color blindness issues in 5% of patients. Once stopped, the color is usually..." + (show)
@rstel7272

Ethambutol can cause color blindness issues in 5% of patients. Once stopped, the color is usually restored.
I was on Ethambutol plus the others for 40 months with regular eye exams and had no issues.
Vision issues from the other drugs are very rare.

Jump to this post

Thanks, Rick! That makes me feel better it is reversible. I was worried I would have permanent eye issues if I experienced them while on the drug.

REPLY
irene5 Irene Estes | @irene5 | Aug 21, 2023
In reply to @healthybon "I just started Ethambutol and Azithromycin. I get my eyes checked by my opthomologist every two..." + (show)
@healthybon

I just started Ethambutol and Azithromycin. I get my eyes checked by my opthomologist every two months....I also use a book that tests problems with color vision, called, ISHIHARA'S TESTS FOR COLOUR DEFICIENCY CONCISE EDITION 2021 I ordered this on Amazon (I think).....SO I CAN TEST MY EYES DAILY. THE tests the opth does are more extensive. I was concerned about what the drug could do to sight, so this is what I worked out to be able to take it with peace of mind.

Jump to this post

How are you doing on those two meds Bonnie? Good girl!! I know it’s hard for you to take medication. ( Irene)

REPLY
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