Hair Loss and MAC

Posted by meadows @meadows, Oct 23, 2023

Has anyone found since having MAC-lung they have hair loss? I am not yet on the antibiotics and have noticed this. Other reasons have been ruled out. Thanks very much. (I also have bronchiectasis.)

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I have both MAC/Bronchiactisis and take the Big 3 along with Amikacin and have never experienced hair loss. In fact my Cosmetologist says my hair has gotten thicker over the last 10 months which was shocking.

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@tconz

I have both MAC/Bronchiactisis and take the Big 3 along with Amikacin and have never experienced hair loss. In fact my Cosmetologist says my hair has gotten thicker over the last 10 months which was shocking.

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Thanks very much for sharing your experiences.

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I definitely have noticed hair loss. When I was in the depths of my most recent infection it was especially noticeable. In general, when I empty the vacuum canister (with my mask on!) it's a tie between my two cats and myself as to who is the the worst shedder in the house.

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Thanks for sharing. I guess it varies from person to person, and it can be tough to pinpoint the cause. It is very frustrating to be losing hair. Mine is about 1/2 the thickness it was. Fortunately, I had thick hair to start with. Thanks again for sharing.

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I was experiencing hair loss and didn’t know why. I finally was diagnosed with MAC, an I am sure that was the cause because my doctor checked all the other possible causes ( thyroid, etc ) and everything was normal.
Hair loss coincided with my feeling tired, losing weight.

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Thanks for writing. I too have the inability to gain weight. Mine, I think, is also tied to reflux - that too can be related to Mac and so on. Thanks again for sharing what you have been through. Patty

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@tconz

I have both MAC/Bronchiactisis and take the Big 3 along with Amikacin and have never experienced hair loss. In fact my Cosmetologist says my hair has gotten thicker over the last 10 months which was shocking.

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Hi, I have just been diagnosed with Mac/Bronchiastisis and my Dr. wants me to start the Big 3, Azithromcyin, Rifampin and Ethambutol. I'm to take them all at once, Mon, Wed and Friday. I had asked to be able to start one at a time, maybe a week or two apart to see if I experience any side effects and they told me no. No mention of Amikacin. How are you taking the meds? Thank you.

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I started with each one of the Big 3 separately (5 days for each one) to see if I had a reaction and luckily I did not. I have always been on them 7 days a week. I was at NJH in May and they have me taking all 3 first thing in the morning (empty stomach) wait 1 hour before eating. I have never had any stomach issues. I get my eyes, ears and bloodwork checked every 3 months. I personally think it is wise trying one med at a time to see if you have a reaction. My doctors were fine with doing it this way.

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@angeles31

I was experiencing hair loss and didn’t know why. I finally was diagnosed with MAC, an I am sure that was the cause because my doctor checked all the other possible causes ( thyroid, etc ) and everything was normal.
Hair loss coincided with my feeling tired, losing weight.

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This is the exact same experience that I had.

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Thanks for letting me know about your experience. Was anyone able to help you prevent more hair loss?

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