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Patricia,

This is another great question. I took azithromycin for two years in the past. I am sure that this drug will be discussed during the presentation this afternoon. This drug is one of the most important drugs in the NTM toolbox; it is an antibiotic that has anti inflammatory properties. 

Patricia,

Great questions. I sent this forward to be added to the questions in the queue. You can also raise your hand to ask the question after the presentation.

My doctor recommended this and wondering if anyone has taken and can share their experience? thank you

Hello! I am so looking forward to this session! I have Bronchiectasis & Myco Bacterium Abcessus. The Infectious Disease doctor suggested this treatment: Amikacin 25 mg/Kg ( 1290 mg IV ) 3 times weekly for 4 - 6 weeks with weekly amikacin troughs plus PO azithromycin 500 mg daily and doxycycline 100 mg BID and after 4-6 weeks will continue azithromycin and doxycycline for atleast 1 year. I am considered about the side effects and effectiveness. Can the doctor speak to what other patients experience with these medications? Likelyhood of improvement? Any statistics or where I can find statistics on taking these medications? Thank you again!

Welcome! We hope you will join us for the Coffee Break tomorrow. 

Welcome to the family!

I’m the Assistant Director of Education and Community. If you have any questions or need resources, please reach out. A few key places to start on the site:

1. Podcast series- provider interviews with clinical updates and practical tips
2. Education downloads- patient and provider resources including action plans for exacerbations, airway clearance videos/webinars, the All About Bronchiectasis booklet, and more

Happy to help you find anything specific!

Das23,

I am so glad that you continue to practice good self care, preventative measures !!! Thank you for all  that you do to contribute to this community. Have a superb day! :) 

I'll do what I always  try do----Exercise-Eat Right------Do my Airway Clearance!!!!!.....Take care men....and ladies😀👍

💙 Men’s Health Week 2026 – Building Empathy into Action 💙 This week, we’re shining a light on the importance of men’s health — not just physical, but mental and emotional too. Support each other — because strong communities build stronger men. Let’s break the stigma, encourage regular check-ups, and remind the men in our lives that caring for themselves is a sign of strength.

This week is about encouraging people to prioritize self-care, build healthy habits, and support physical and emotional well-being. Let us reframe self-care as a lifestyle practice rather than a novelty. It is about committing to small, sustainable changes that improve overall health over time.

Chronic stress is linked to complex health issues. Small, consistent changes in our lives—moving daily, adequate hydration, and good sleep hygiene are important. Stress management and emotional self-care can be done by practicing mindfulness through meditation or deep breathing exercises to improve our mental wellness. Work on talking openly about how you’re feeling. All of these practices can have measurable long-term benefits

Throughout the week and onward, we are reminding all men in our lives that their lung health matters. 💙 Bronchiectasis is often underdiagnosed, especially in men. Men may delay seeking care until symptoms like a chronic cough appear. Major delays to diagnosis continue to exist for men with NTM disease. Educate other men to know the signs of bronchiectasis/ NTM and encourage them to speak with their doctor.

What actions are you going to take during Men’s Health Week?

Welcome LucyMoe,

We are glad you found us. Please let us know if you have any specific questions. 

Welcome Lucymoe......

Welcome to 360social!

Joining us this month is Dr. Ahmed Hamdi, MD, AAHIVS, Assistant Professor of Medicine at the Baylor College of Medicine (BCM) to present medications for BNTM patients.

Dr. Hamdi is the Co-Director of the BCM Non-tuberculous Mycobacterial Diseases Program. 

The meeting registration link is here:

https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration 

Kelly, 

Hello! I am sorry that you are dealing with such challenges. The uncertainty of treatment side effects can be overwhelming, to say the least. 

I have 3 strains of M. abcessuss (however it’s spelled) and MAC. Started in 2022, it took this long 2 find someone 2 actually want to treat it now. I have it in both lungs. I am 57, no energy & treatment includes Biaxin, Neuzyra and I.V. of Amikcin. I’m scared to put my body thru more upset & knowing I can lose hearing which is the only thing I have left. Of course the dr isn’t gonna tell or predict what’s gonna happen  I wanted to know the side effects of these meds and if possible any outcomes with anyone with same affliction

https://m.youtube.com/watch?v=bnqR86VQtis&ra=m

https://m.youtube.com/watch?v=6srDnbL_Txw&ra=m

another video from Michelle MacDonald on nutrition for individuals with BNTM 

Janh,

Thank you insurance does notoer

Janh,

Hello! I walk as much as I can in good days. Lifting light weights and doing light yoga or chair yoga is beneficial for respiratory health. Below is a link to information on exercise for BNTM patients: https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Exercise

Janh,

Hello! I am sorry about your weight loss. Can you check to see if your insurance covers a registered dietitian/health coach?  Below is some information on nutrition for BNTM patients: https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Nutrition

Tim, 

Thank you for sharing. :) 

Tim,

Hello! I am sorry to read your update. I would suggest to reach out to your Pulmonologist to update her on your coughing, by phone or the patient portal instead of waiting until your appointment in July. 

My wife says I seem to be coughing more vs. less since taking Brensupri.  I'll discuss with my pulmonologist when I see her in July.

Google "Varon" and you will see a large selection of choices at much better prices on units with good customer reviews than many of the other high priced brands.

I am struggling with weight loss. Was at pulmonologist and says I need to gain weight. Any ideas would be appreciated

I would like to know what exercises everyone does and especially to increase lung volume

RSG2,

Hello! Welcome to the BNTM community.  Please browse the site to review educational information.  Please let us know if you have any specific questions. We are here to support you on your journey. 

I am also looking forward to this coffee break with Dr. Hamdi.  Understanding the purpose of each medicine you take, how and when to take it, and the potential side effects is of utmost importance. I hope that you will be able to join us on Wednesday at 230pm, EST. 

I’m looking forward to Dr. Hamdi joining us and presenting on the Coffee Break next week!

Welcome to 360social!

Same with my husband. But he still takes it -hopefully it will show some results!

More information on inhalers: https://www.bronchandntm.org/For-Patients/Learn-More/Medications-and-Therapies/Medicines

Ronbo,

Hello! Has your Pulmonologist discussed the use of an inhaler drug as needed? There are many different types of inhalers; hopefully your doctor can prescribe one that will assist you. 

5644,

Hello!

I am sorry that you are not experiencing good results with Brinsupri. Please keep us updated after you discuss your plans with your Pulmonologist on whether or not to continue the drug.

My experience about the same as you. 

I have been on it since  it first came out. Truthfully I haven’t noticed much of a change. Still have flareups and just got over pneumonia. (One of the side effects is respiratory  infection). Thinking of going off. 

I wondered if anyone is using Brinsupri?  And if they feel that it helps with the flareups. I have not felt much of a difference!  

Hi Ronbo!

Thank you for reaching out with your question.

One thing that may be helpful is learning a few breathing techniques that can help bring your oxygen levels back up and help you feel more in control when you're struggling to catch your breath. These techniques can help you slow down, feel more centered, and work through some of the anxiety or fear that can come with those difficult moments.

I've included a link below that I hope will be a helpful resource for you.

Please keep asking questions if there's anything else we can help with. We're glad you're here, and we're happy to support you however we can.

https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Breathing-Techniques

As Brandon said in the above post- we are truly here to support you on your journey. We have assistance available for you in many forms. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone at (833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand  your concerns. You can also email us at contactus@bronchandntm.orgto get more information on any specific questions you may have. Our Ambassadors can’t provide medical advice but may be able to assist you with additional resources. Please do reach out as needed. 

Hi, the only medication I take is NAC Tablet, best wishes Eileen.

A lot may have changed since I left pulmonary rehab 6 years ago, but a ton of my patients used the Inogen. Many of them liked the idea of the “double battery” they offered. I’d check them out for options. 

Below are the top 5 portable oxygen concentrators, rated by consumer voice: https://www.consumervoice.org/top-portable-oxygen-concentrators?gclid=&kw=compare+caire+portable+oxygen&cpn=603077732&adgroup=1345804602025262&loc_physical=163234&loc_interest=&matchtype=p&network=o&device=m&creative=&placement=&target=&adpos=&utm_source=bing&b_ref=eee6341df15a145372b15e3d3841e867&msclkid=eee6341df15a145372b15e3d3841e867&anura=0

Hello! Have you checked out the Inogen Brand to see if this brand is covered? A friend uses the Inogen, which is lightweight.

Has anyone had to use oxygen?  Looking for a small light weight unit. Medicare provided one but very heavy to carry