1. < MAC & Bronchiectasis

Long long on big 3 before getting a negative test result.

Posted by tairakhan666 @tairakhan666, Mar 27 6:40pm

Mu husband was diagnosed Sept 2024. He has been on the big 3 for 5 months now. Recently, he stopped taking the rifabutin because his white blood count went dangerously low.
He is still testing positive. Can you please share how long it took you before getting a negative. I think we're both very discouranged and getting worried.
Thank you.

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namd | @namd | Mar 28 1:55pm

I was on the big 3 on a daily basis for 4 months before I tested negative. It can take some people a long time. I went onto taking the antibiotics 3 times weekly after a year as I could not tolerate them. Rifanpicin was awful and gave me bladder problems. Some people are lucky and get no side effects but I felt awful all the time. Weight loss was my biggest problem as I had no appetite. My MAC has returned a year later I am so annoyed and do not think I can do another 14 - 18 months of these toxic meds. There has to be another way! Good luck and I hope your husband tests negative soon.

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1 reply
lauraadam2425 | @lauraadam2425 | Mar 29 6:59am

Hi, don't be discouraged it takes time and everyone is different. I am 78 years old and finally a year ago was negative but I was on the big 3 for over 2 years. After 9 mos I had to stop Ethambutal because of eye problems but continued Rifampin and Azithromycin. Then they put me on Aricayse (sp) but after 6 months had to get off because of a constant chronic cough. It is a long process but if you keep going it can be beat. I still worry everyday that it will come back but am glad for my days free of the many antibiotics. Good Luck

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2 replies
sherrig | @sherrig | Mar 29 3:30pm

I started treatment March 2024 been negative since Mid August 2024.

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1 reply
tairakhan666 | @tairakhan666 | Mar 29 6:43pm
In reply to @namd "I was on the big 3 on a daily basis for 4 months before I tested..." + (show)
@namd

I was on the big 3 on a daily basis for 4 months before I tested negative. It can take some people a long time. I went onto taking the antibiotics 3 times weekly after a year as I could not tolerate them. Rifanpicin was awful and gave me bladder problems. Some people are lucky and get no side effects but I felt awful all the time. Weight loss was my biggest problem as I had no appetite. My MAC has returned a year later I am so annoyed and do not think I can do another 14 - 18 months of these toxic meds. There has to be another way! Good luck and I hope your husband tests negative soon.

Jump to this post

I'm so sorry you're going through it AGAIN. I agree with you, wish there was a better way. My husband is going thru some bad side effects as well. Best wishes on your journey to healing. Take care!

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tairakhan666 | @tairakhan666 | Mar 29 8:12pm
In reply to @lauraadam2425 "Hi, don't be discouraged it takes time and everyone is different. I am 78 years old..." + (show)
@lauraadam2425

Hi, don't be discouraged it takes time and everyone is different. I am 78 years old and finally a year ago was negative but I was on the big 3 for over 2 years. After 9 mos I had to stop Ethambutal because of eye problems but continued Rifampin and Azithromycin. Then they put me on Aricayse (sp) but after 6 months had to get off because of a constant chronic cough. It is a long process but if you keep going it can be beat. I still worry everyday that it will come back but am glad for my days free of the many antibiotics. Good Luck

Jump to this post

Thank you!

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tairakhan666 | @tairakhan666 | Mar 29 8:13pm
In reply to @sherrig "I started treatment March 2024 been negative since Mid August 2024." + (show)
@sherrig

I started treatment March 2024 been negative since Mid August 2024.

Jump to this post

I'm crossing fingers he will test negative in the 6th month.
Good luck and take care!!

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tairakhan666 | @tairakhan666 | Mar 29 8:15pm
In reply to @lauraadam2425 "Hi, don't be discouraged it takes time and everyone is different. I am 78 years old..." + (show)
@lauraadam2425

Hi, don't be discouraged it takes time and everyone is different. I am 78 years old and finally a year ago was negative but I was on the big 3 for over 2 years. After 9 mos I had to stop Ethambutal because of eye problems but continued Rifampin and Azithromycin. Then they put me on Aricayse (sp) but after 6 months had to get off because of a constant chronic cough. It is a long process but if you keep going it can be beat. I still worry everyday that it will come back but am glad for my days free of the many antibiotics. Good Luck

Jump to this post

Good to hear you're clear and doing well!

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at.the.boardwalk@comcast.net | @beachbum1945 | Mar 30 2:25pm

This condition causes a lot of anxiety. It helps to research and find the right infectious disease doctor. I had no signs of broncietasis but another unrelated test showed I had it. Treated 18 months with 3 antibiotic regimen and tested negative. No side effects. Several years later it came back in the form of coughing up blood. Infectious disease doctor said the former IF disease dr. Had me on the wrong dosage, not strong enough. I am back now on 3 antibiotic regimen plus Arikayce Inhalation treatment. My IF disease doctor said Arikayce is better than any other medication to get rid of lung infections. My side effects from all this is fatigue and a husky voice. It will be worth it if this works and the infection does not come back. Trying to be optimistic.

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