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.

Correction… I meant “second 10 month,” not 19

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@sue22

Hi Rick
That is such a prolonged period of MAC treatment. Very sorry to hear you went through that. During the second 19 month period and again another 12 months were you just symptomatic of we’re you having any positive cultures for MAC? And if you were doing sputum cultures during those 2nd and 3rd rounds, did Aspergillus keep showing up?
Thank you if you want to share.

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Correction.. I meant “second 10 month” not 19

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@sue22

Hi Rick
That is such a prolonged period of MAC treatment. Very sorry to hear you went through that. During the second 19 month period and again another 12 months were you just symptomatic of we’re you having any positive cultures for MAC? And if you were doing sputum cultures during those 2nd and 3rd rounds, did Aspergillus keep showing up?
Thank you if you want to share.

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My sputum was clear six month into the initial treatment. The CT continued to show infection in the pleura. After 30 months, the radiologist said I was stable and the pulminologist said to stop treatment. Systems reappeared 6 months later, started the MAC treatment, later a super dimension bronchoscopy showed no MAC and confirmed the aspergillus. I did both MAC treatment along with fungal treatment for six months. Now only the fungal treatment since April. I'm what they call complicated but it seems we all are.

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Hello all, I spoke to my doctor’s nurse this week about starting some type of airway clearance. My doc is recommending a 3% saline nebulizer. Sue said that 7% was recommended but will 3% have any effect? I called earlier and asked about 7% so I’m waiting to hear back.

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@benniej23

Hello all, I spoke to my doctor’s nurse this week about starting some type of airway clearance. My doc is recommending a 3% saline nebulizer. Sue said that 7% was recommended but will 3% have any effect? I called earlier and asked about 7% so I’m waiting to hear back.

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You might want to start with the 3% and see how you tolerate it. 7% can be a little more harsh.

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@rstel7272

You might want to start with the 3% and see how you tolerate it. 7% can be a little more harsh.

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I do the 7% each morning. I had MAC about 10 years ago and did the 3 anti biotics 18 months. Pulmonologist then did not explain the airway clearance. Now been diagnosed with bronchiechtosis and on top of that Abcessus. Been doing 7% neb clearance and still monitoring things before committing to antibiotics. I believe airway clearance is best way to start. Least sisruptive. And at least with abcessus some resolve just with that.

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Correction “Disruptive”

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@rstel7272

You might want to start with the 3% and see how you tolerate it. 7% can be a little more harsh.

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Ok, thanks!

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@rsr

I do the 7% each morning. I had MAC about 10 years ago and did the 3 anti biotics 18 months. Pulmonologist then did not explain the airway clearance. Now been diagnosed with bronchiechtosis and on top of that Abcessus. Been doing 7% neb clearance and still monitoring things before committing to antibiotics. I believe airway clearance is best way to start. Least sisruptive. And at least with abcessus some resolve just with that.

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Thanks for the info! I hope your abcessus resolves with the neb clearance.

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@benniej23

Hello all, I spoke to my doctor’s nurse this week about starting some type of airway clearance. My doc is recommending a 3% saline nebulizer. Sue said that 7% was recommended but will 3% have any effect? I called earlier and asked about 7% so I’m waiting to hear back.

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My pulmonologist put me on 3% saline after diagnosis. After 3 years nebulizing and reading on this site that 7% was better I switched. I found that 7% works far better in the AM but if I use 7% in the evening coughing interfered with my sleep. So now I use 7% in the morning and 3% around 5 PM. When I shared this with my pulmonologist he didn’t know about 7% but said he had no problem ordering it. Medicare and most insurance companies do not cover saline as there is no meds in it.

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