1. < MAC & Bronchiectasis

Length of Time on Antibiotic Regimen

Posted by lorrie48 @lorrie48, Dec 14, 2024

I was wondering how long the people here have been or had been taking the Triple Cocktail. I'm also curious about the dosages you've been prescribed. I started with 1 azithromycin, 1 ethambutol, and 2 rifampin 3x/wk. Four months in, my pulmonologist prescribed 1-3-2 3x/wk. I expect the dosages to be increased again, since the coughing has increased, not decreased, since I started the meds six months ago. I'd really appreciate hearing about the success of others' treatments.

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irene5 Irene Estes | @irene5 | 4 days ago
In reply to @clk1958 "I found this site and very interested in what the comments are in regards to this..." + (show)
@clk1958

I found this site and very interested in what the comments are in regards to this disease. I was diagnosed with bronchictasis/Mac (Non tuberculosis) back in November 2023 and have been on antibiotics (Rifampin, Azithromycin, Ethambutal) and zenhal inhaer every day for the last two months and do not see any improvement yet, even though lung dr. said could start to see results in two months. - am actually coughing more every day non stop with lots of phlegm with the occasional blood streaks. Was trying to avoid the bronchoscope but dr. wants to go down with camera to see where bleeding is coming from. Very alarming and some days just want to give up 🙁 I lost approx. 15 lbs in which had none to lose.

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Please don’t give up!! I lost 25 pounds which never came back, but I am MAC free. A bronch is a good and safe diagnostic tool. Your doctor will get an answer for you. Try not to worry. Blood is scary but with a bronch you will get the answer. Irene5

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1 reply
clk1958 | @clk1958 | 4 days ago
In reply to @irene5 "Please don’t give up!! I lost 25 pounds which never came back, but I am MAC..." + (show)
@irene5

Please don’t give up!! I lost 25 pounds which never came back, but I am MAC free. A bronch is a good and safe diagnostic tool. Your doctor will get an answer for you. Try not to worry. Blood is scary but with a bronch you will get the answer. Irene5

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Thank you Irene, I sure need some positive feedback. I retired a year and half ago snd this is my retirement gift. Being Canadian but my common law husband and I own a house in Arizona and I’m not able to go as blood tests every month along with being administered the drugs by monitored health care facility. I thank you for sharing,
Connie

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1 reply
clk1958 | @clk1958 | 4 days ago
In reply to @sueinmn "what does the CT scan show as far as lung condition? Is the doctor an expert..." + (show)
@sueinmn

what does the CT scan show as far as lung condition? Is the doctor an expert in treating bronchiectasis and MAC?

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Hi Sue, thanks for asking. The scans show quite a few nodules, started with one when first scan July 2024 then quite a few more second scan in November 2024. This lung doctor is a specialist in this field and have had nothing but great reviews on him.
He originally didn’t want to do the bronch scope but since bleeding he suggested putting a camera down to see what is going on. Wanted me to give the pills a chance to work first and if blood in sputum continued he would insist on one.

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irene5 Irene Estes | @irene5 | 3 days ago
In reply to @clk1958 "Thank you Irene, I sure need some positive feedback. I retired a year and half ago..." + (show)
@clk1958

Thank you Irene, I sure need some positive feedback. I retired a year and half ago snd this is my retirement gift. Being Canadian but my common law husband and I own a house in Arizona and I’m not able to go as blood tests every month along with being administered the drugs by monitored health care facility. I thank you for sharing,
Connie

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I’m so sorry Connie. MAC was my retirement gift in 2014. I wanted to continue teaching but just didn’t feel well. My son in law ( an obgyn) sent me for an X-ray and CT scan. My pcp thought I was depressed because I retired. I explained to her that’s why I retired- because I didn’t feel well. Good grief! And the rest is history. I’m really sorry you can’t be with your significant other. My husband is Canadian. He was born in New Brunswick. I’ll pray for you- and I don’t say that lightly. If you need to you can private message me any time. Blessings and hugs, This journey is not easy. This forum has been a Godsend. Irene

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1 reply
clk1958 | @clk1958 | 3 days ago
In reply to @irene5 "I’m so sorry Connie. MAC was my retirement gift in 2014. I wanted to continue teaching..." + (show)
@irene5

I’m so sorry Connie. MAC was my retirement gift in 2014. I wanted to continue teaching but just didn’t feel well. My son in law ( an obgyn) sent me for an X-ray and CT scan. My pcp thought I was depressed because I retired. I explained to her that’s why I retired- because I didn’t feel well. Good grief! And the rest is history. I’m really sorry you can’t be with your significant other. My husband is Canadian. He was born in New Brunswick. I’ll pray for you- and I don’t say that lightly. If you need to you can private message me any time. Blessings and hugs, This journey is not easy. This forum has been a Godsend. Irene

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Irene, sounds so familiar - my family doctor thought i was also depressed, but I insisted there is something else going on.
Excuse my ignorance but how can I private message if needed. I followed the prompts but not working for me. It is good to know I (we) are not alone, as this forum has been great. I guess I can say I am a little afraid of this disease.
Connie

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irene5 Irene Estes | @irene5 | 3 days ago

Just click on my blue name at the top @irene5 and it should take you there.

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irene5 Irene Estes | @irene5 | 3 days ago

It should say send private message under my lovely face:).

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helen1000 | @helen1000 | 13 hours ago
In reply to @dulwich "The guidelines say that treatment should be continued for one year of negative cultures There is..." + (show)
@dulwich

The guidelines say that treatment should be continued for one year of negative cultures
There is some evidence that treatment for 18 months reduces the risk of relapse and that is what I did. No Mac for three years and off treatment two years next April.
Doing well but much more sputum in last two years and now colonized with Staph aureus. I do sometimes wonder about whether this is just the progression of bronchiectasis or worsened by 4 years of antibiotics including 20 months of Arikayce

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So sorry to hear that you colonized with staph aureus. I see many NTM patients colonized with more NTM after MAC is done. Did you continue airway clearance twice a day after MAC is cured?

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atlantabec | @atlantabec | 3 hours ago
In reply to @lorrie48 "Thank you, Kristi, for your feedback. I didn't have a cough either ... in the very..." + (show)
@lorrie48

Thank you, Kristi, for your feedback. I didn't have a cough either ... in the very beginning. A calcium score prescribed by my cardio doctor indicated infiltrates in my lungs. So, no symptoms, but these infiltrates. Another year passed before I had a definite diagnosis of MAC and began the antibiotics. By then I was chirping more than coughing. Now I'm coughing, on and off during the day but mostly when I wake up in the morning. Coughing and sometimes losing my breath. I'm reading here for the first time about airway cleansing. I don't know what that involves. Do you?

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I just posted in response to another question (in this forum) -- mine was found the exact same way - I had no symptoms either (I'm 54, no other health issues) but unfortunately I have 2 cavitary lesions so I just started first of 3 abx. I think your pulmonologist should give you recommendations on effective coughing - there's a lot on youtube but check with your doctor.
-Rebecca

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