1. < MAC & Bronchiectasis

How exactly does Azithromycin help symptoms?

Posted by rebecross @rebecross, Nov 18, 2023

Just doubled my Azithromycin dose to 500 mg, MWF. I notice a massive increase in mucus ( 1/2 cup) both when nebulizing with my usual 3% saline (Doc will not go to %7) and all day when I cough. ALL DAY. People say this drug was a game changer? HOW? DId the mucus decrease, did the cough diminish? Doc refuses to speculate how it might actually change my horrible "quality of life". Says it will change the imuno-environment in the lungs and is NOT about any active infection.
On the plus side I never have shortness of breath or a hard time breathing, and fatigue is only after another night coughing.

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reneemc | @reneemc | Nov 19, 2023

What is the heaviness in the lungs caused from, mucus or infection? I feel it in my back and under my arms

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rebecross | @rebecross | Nov 19, 2023
In reply to @dlynn1210 "One of the ‘side effects’ of Azithromycin is hearing loss. I was on it for almost..." + (show)
@dlynn1210

One of the ‘side effects’ of Azithromycin is hearing loss. I was on it for almost 4 years and only then looked up side effects of the big three. I have sustained a substantial hearing loss which affects me (asking my husband “what?”) and him getting frustrated because I continually ask him “What?”. I only wish I had been advised to get a baseline hearing test before I started taking it.

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Good to know, IF it a tally improves my quality of life I'll be sure to get a baseline!

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1 reply
rebecross | @rebecross | Nov 19, 2023
In reply to @rstel7272 "You might want to get another opinion. I've never heard of AZ prescribed as mono-therapy or..." + (show)
@rstel7272

You might want to get another opinion. I've never heard of AZ prescribed as mono-therapy or without an infection. You don't want to build a resistance to AZ because you might really need it someday

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I'm looking for an out if network doctor ....

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1 reply
rebecross | @rebecross | Nov 19, 2023
In reply to @scoop "For me, I decided not to take azithromycin even though I was in the camp of..." + (show)
@scoop

For me, I decided not to take azithromycin even though I was in the camp of frequent exacerbations. I found that lung clearance 2x day (levalbuterol or albuterol inhaler & 7% saline) was enough to keep the bugs at bay and diminish the frequent infections. My reasoning was to save antibiotics for when I needed them and not to take prophylactically.

Having bronchiectasis makes us prone to various pathogens including MAC/NTM. Azithromycin is one of the mainstays of treatment for MAC. My chances for contracting MAC are not zero, which means I might need azithromycin someday. We're all different and need to make these decisions with our doctors. Thought I'd share an opposing view in case that helps anyone.

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I agree! I am working on getting another opinion. And plan to give it one more month to see if I actually experience any lessening of cough or mucus. If not, I'm not willing to carry on with it.

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dlynn1210 | @dlynn1210 | Nov 19, 2023
In reply to @rebecross "Good to know, IF it a tally improves my quality of life I'll be sure to..." + (show)
@rebecross

Good to know, IF it a tally improves my quality of life I'll be sure to get a baseline!

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Rifampin affects eye sight but after 4 years I have only experienced a slight loss per my Optometrist. We basically had a baseline with my sight because he asked at a routine visit soon after I began the meds if I was on any new meds. At my last visit he told me there was a ‘slight difference but nothing to worry about!

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Rick | @rstel7272 | Nov 19, 2023
In reply to @rebecross "I'm looking for an out if network doctor ...." + (show)
@rebecross

I'm looking for an out if network doctor ....

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I think our hardest task is to find a knowledgeable Doctor(s) we trust.

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