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LaRosa,

I had a visit with my pulmonologist yesterday and I brought up this very issue. He responded that because Brinsupri is so new, it isn’t known yet whether the reduction in symptoms fades over time for a significant number of patients. He noted that most of his patients on Brinsupri have not reported this but also that some never reported a reduction in symptoms to begin with. He also reminded me that the efficacy of the drug is based on research that shows it decreases the number of bronchiectasis flares. It’s main purpose is as a maintenance drug to reduce exacerbations. He called day-to-day symptom reduction a “bonus” that many, but not all, patients report. 

I hope this is helpful information—it was for me.

Best,

Cjack

I’m interested in trying a virtual pulmonary rehab program. Does anyone have experience with or a recommendation for a program?
Cjack

I'm glad you like the app and thank you. We have a lot of great things planned, so be on the lookout for future updates.

Hi CJack,

There are several virtual pulmonary rehabilitation programs available online. One I am somewhat familiar with is Breath Better Rehab. Their website includes a section where you can read about patients’ experiences, which is a great feature.

You could also ask your healthcare provider whether they have any recommendations. I look forward to hearing what others suggest.

I love pulmonary rehabilitation. I worked as a respiratory therapist for three years before stepping into a pulmonary rehabilitation clinic. After three months of training, I saw the difference it could make in patients’ lives, and I was forever changed.

Now, I talk about pulmonary rehabilitation with anyone who will listen. It is amazing to see how working with your body, safely building endurance, and learning breathing techniques can improve a person’s outlook and confidence. 

I love this app too! It makes it so easy to access social with just one click. Even more features are coming in future updates, so stay tuned!

🫁 Have you ever asked about pulmonary rehab?

Pulmonary rehab may not be something you've heard much about with bronchiectasis or NTM. In fact, your doctor may have never even mentioned it. But if you're finding it harder to stay active, getting more short of breath doing everyday things, or feeling like you've lost some strength or stamina, it may be worth asking about.

And don't let the word “rehab” scare you off.

Pulmonary rehab isn't about becoming an athlete or seeing how long you can last on a treadmill. It's a program designed to meet you where you are and help you learn how to safely do more of what you're able to do.

Exercise is part of it, but there's much more. You may learn about breathing techniques, airway clearance, medications, oxygen, nutrition, ways to conserve your energy, and how to better manage day-to-day life with a lung condition.

Sometimes, one of the biggest benefits is simply gaining a little more confidence in what your body can do.

So if pulmonary rehab has never come up in conversation with your healthcare team, there's nothing wrong with being the one to bring it up:

“Do you think pulmonary rehab could help me?”

That one question could open the door to something you didn't know was available.

Have you been through pulmonary rehab? We'd love to hear about your experience. What helped you the most? And if you've never tried it, is it something you'd consider asking your healthcare team about?

The Bronchiectasis and NTM Association has a great resource that explains pulmonary rehab, what happens during the program, and how it may help:

https://www.bronchandntm.org/For-Patients/Learn-More/Exacerbations-and-Treatment/Pulmonary-Rehab

Maggie,

Hello! I am so happy to read that you love this app! There is so much available information available at our fingertips. The BNTM Community has made huge gains over the last decade and there is so much more to look forward to. The expansion of the Care Center Network, more drugs and treatments in the pipeline offers us so much more HOPE than ever before. 😍😍

I love this app! It makes it so easy to keep up with discussions and has so much information!! Thank you to the developers! 

CJack,

Hello! I will get back to you tomorrow with a few names of virtual pulmonary rehab providers . Have a pleasant evening. 

Hi LaRosa! I’m new here too. 😊 I’ve been on the 25 mg for 13 months. I haven’t experienced what you describe. Being on 10mg gives you the option of increasing to 25mg if your pulmonologist thinks it would benefit you.  We all are having different reactions and responses to this medication. It has its challenges, but like you, after more than 30 years with Bronchiectasis, it is so amazing to have some change for the better. 
Maggie 

Does anyone have a recommendation for a virtual pulmonary rehab program?

Cjack

La Rosa,

 I have been taking 25 mg of Brinsupri for about 9 mos. I too found it quite helpful initially with a marked reduction in lung secretions and coughing. About a month ago I began to notice that it didn’t seem to be working as well. I’m not back to square one, I do think it’s still helping, just not as much as before. I guess time will tell if this trend continues…

Cjack

Morgan,

Hello! Wishing you a wonderful trip!!  I hope that the 2nd attempt at Brinsupri is more tolerable for you.  I am glad that you now have the information on the inLighten Program.  

Maggie H,

Hello! Thank you so much for sharing your experience with the community! I so greatly appreciate you mentioning the inLighten Program. Below is information on this support program:

The inLighten Support Program is designed to assist patients who are prescribed medications such as BRINSUPRI or ARIKAYCE. It offers one-on-one support through dedicated coordinators who guide patients through treatment initiation, enrollment, and ongoing follow-ups, ensuring they understand next steps and have access to necessary resources.

Key Features:

• Personalized Guidance: inLighten Coordinators provide individualized support, answering questions about medication delivery, administration, and treatment schedules brinsuprihcp.com.
• Enrollment Assistance: Patients can enroll in the program by completing an enrollment form in-office, online at the program website, or by phone with a coordinator brinsuprihcp.com.
• Ongoing Follow-Up: Coordinators maintain contact with patients throughout their treatment, offering updates, reminders, and guidance to ensure adherence and address concerns brinsuprihcp.com.
• Educational Resources: The program provides information about the medication, potential side effects, and best practices for managing treatment insmed.com.
• Access Support: inLighten helps patients navigate insurance coverage, prior authorizations, and other access-related questions, though coordinators do not submit paperwork on behalf of prescribers brinsuprihcp.com. 

1. You can call the dedicated support line at 833-LIGHT-00 (Monday–Friday, 8 AM–8 PM ET) to speak with a coordinator brinsuprihcp.com.
2. Please let us know if you enroll in the program- we would love for you to share your experiences.  Thank you in advance.  

Thank you for your comments;  I have been on the Brinsupri for 5 weeks and with a long delayed foreign trip on the schedule in a month, I decided to go off the medication to see if I could regain some of my usual energy and after two days I feel much better.  I plan to go back on the Brinsupri after my trip and see if I can tolerate it again.  I was glad to hear that a second try might be more tolerable.  

A NEW TOOL FOR THE BNTM COMMUNITY! 💙📱

Living with Bronchiectasis and NTM can sometimes feel like a full-time job—keeping track of symptoms, medications, appointments, sputum cultures, questions for your health care team, and so much more. That is why we are so excited to share a new app designed to help BNTM patients stay more informed and connected to their own care.

✨ One more tool in your toolbox.

✨ One place to help keep important information at your fingertips.

✨ One more way to become an active partner in your healthcare journey.

Technology cannot replace your healthcare team—but the right tools can help you feel more prepared for conversations with them. The Care Central: Bronchiectasis & NTM is a free mobile application developed to support individuals living with bronchiectasis and NTM lung disease, as well as the healthcare professionals who care for them. The app was created to improve disease management, communication, education, support, and overall quality of care for the bronchiectasis and NTM community.

For patients and caregivers, Care Central provides access to this site: BronchandNTM360social. The platform allows users to ask questions, participate in discussions, read blogs, share experiences, and engage with patients, caregivers, advocates, physicians, and healthcare professionals in a supportive environment.

The app also includes a wide range of educational resources developed and approved by experts in the field. Users can download practical educational materials such as the Bronchiectasis Action Plan, NTM Management Tool, Symptom Tracker, Wallet Card, and educational booklets designed to help patients better understand and manage their condition. These resources are designed to encourage informed conversations between patients and providers while promoting proactive disease management.

This app features access to podcasts focused on bronchiectasis and NTM lung disease. These episodes include discussions with healthcare experts, patient advocates, caregivers, and individuals living with these conditions, providing listeners with current information, treatment insights, and guidance.

Another feature is helping users find nearby centers within the Bronchiectasis and NTM Care Center Network. These specialized centers provide high-quality, expert-driven care focused on properly diagnosing and managing bronchiectasis and NTM lung disease. Users can search by ZIP code, state, or address to identify expert centers closest to their home.

Healthcare professionals using the app have access to clinical tools and evidence-based resources that support patient care and treatment decision-making. Providers can also use the app to locate expert centers within the BNTM Care Center Network.

Care Central connects users directly to other Bronchiectasis and NTM Association resources, including information about actively recruiting clinical trials and relevant clinical publications. The combination of patient support, provider tools, educational content, and access to expert care resources in one centralized platform- the app serves as a comprehensive digital resource for the bronchiectasis and NTM community.

Care Central App reflects the Bronchiectasis and NTM Association’s commitment to improving education, collaboration, and quality of care for individuals affected by these chronic lung diseases.

Have you tried the new app to help manage your BNTM journey? The Care Central: Bronchiectasis & NTM App is available in the App Store and Google Play. The links are listed below.

Apple App Store: CareCentral:Bronchiectasis&NTM

https://play.google.com/store/apps/details?id=com.copdfoundation.carecentralbronchandntm 

Google Play: CareCentral:Bronchiectasis&NTM

Lucinda,

I am glad that you are now able to enjoy cooler temperatures and get out for a walk in the evening. :)

Loving the chili again! We really need to do a Bronchiectasis and NTM Recipe Exchange sometime.

I think we all have a few of those dishes that are more than just food. They bring back memories, give us a little comfort, and somehow make the changing seasons feel a little more special. There’s just something nice about looking forward to those familiar favorites as the weather changes and another season rolls around. 🍂❤️

Plus, it would be fun to see what everyone else is cooking and maybe pick up a few new favorites along the way. I’m thinking we may need to make this happen!  What does everyone think?

That's perfect - and I am so ready for chili!  

Tennessee has been stuck in a heat dome; it has been 100 degrees every day for almost the entire month of September. While I love the summer, I'm welcoming "sweater weather." It's been months, but I was finally able to take a nice relaxing walk yesterday evening. Evening walks, watching the leaves change colors, and bowls of chili are my favorites in the fall.  

Mike,

Hello! What symptoms are you experiencing?

Hi Everyone,

I just got my sputum sample results from lab and it shows I have heavy amounts of  pseudomonas and steno in my lungs. 

I’m now on max dose oral Cipro.

Is this pneumonia? And will I likely have to go on another antibiotic to get rid of Steno? I get mixed diagnosis from my pulmonologist who I’m ready to drop any minute. Appreciate anyone’s comments.

Morgan,

Hello! Welcome to the community. I am sorry to read about your side effects? Are you on 25mg, or 10mg?  I have heard that other people are experiencing headaches as well. Have you discussed this side effect with your healthcare provider? 

Hi Morgan, 

I’ve been on Brinsupri for 14 months (with a pause for 3 months due to multiple lung infections ). Unrelated to Brinsupri) I’m sorry you are having a hard time. How long have you been on it? Are you on the 10mg or the 25mg? Are you part of the Enlighten Support Program?  They are wonderful about letting us talk directly to the Pharmacist about side effects. I did have nausea and headaches in the beginning but they subsided. I have some other side effects , but I am trying hard to stick with it because for me, the benefits do out way the side effects. 
Warmly , Maggie 

We must have pockets for our iPhones these days, lol. Enjoy the beautiful sweater weather. I hope it stays “ sweater weather “ for as long as possible.🙂🍂 😍

Sweater weather is my favorite time of year! 🍂 Being able to comfortably throw on a sweatshirt or jacket and head outside just makes me happy. And come on—you’ve got extra pockets! How darn cool is that? 

I'm new to the community and have had BE for 15 years which has gotten worse over time.  I recently started on the new medication, Binsupri, and am having lots of side effects, i.e., headaches, nausea, lethargy.  Has anyone  else experienced these side effects?

Thanks 

Hello! Below is a list of a few benefits of Telehealth: 
• Connect with a BNTM specialist without a long drive once you are an established patient. Discuss symptoms, medications and treatment concerns
• Review questions before or after an in-person appointment
• Stay connected with your healthcare team between visits
• Include a caregiver or family member when appropriate

But telehealth isn’t right for every appointment. Some visits require an examination, testing, imaging, sputum collection, pulmonary function testing or other in-person care.

The goal isn’t telehealth OR in-person care — it’s having access to the right care, at the right time, in the right setting. 💙

Have you included a family member or friend at your telehealth appointment? 

I love the cooler weather, great for walking 🚶‍♀️ outdoors. The beauty of the fall foliage is amazing.  I enjoy watching the Steelers play mid game when the game is exciting. Lastly, I love breaking out the comfy clothes / sweaters for lounging on the cooler days. Welcome Autumn 🍂 season! I hope that you mahe the best of the months ahead. 

We are a football family! Both my high school-aged boys play, and my family is devoted Virginia Tech (Hokies) fans. Bring on all the football games coupled with yummy chili (not too spicy) and cooler weather. I am here for it!

Hi KayJay. 

I am sorry to hear of your new diagnosis. Unfortunately, most people who get bronchiectasis will never know the reason/cause for it to occur. As you may have read, people with bronchiectasis are at an increased risk of getting an NTM infection. You are doing all the right things by being active in your life, and I would encourage you to continue to exercise frequently. 

Now on to the treatment: People who are treated with multiple antibiotics have varying side effects. The most common of these are nausea and weight loss. However, there are plenty of folks who tolerate the medicines just fine with little to no adverse effects. One of the things we recommend when starting treatment is to add one medicine at a time. That way, you will be able to identify if there is one that causes you any issues. The other thing is to follow the guidelines on the bottle (whether taken with food / avoid alcohol etc.). 

If you do experience side effects that are not expected or tolerable, please notify your health care provider right away and update them. Please keep us posted on your journey. Our community is here for you.  

Kay Jay,

Hello! I am sorry to read about your recent diagnosis but I am glad they diagnosed you early, before other respiratory symptoms began. M.Avium and M. Abscessus are the two most common types of NTM. Many others on this site have also been diagnosed with this and have successfully gone through treatment. Being diagnosed with a rare disorder that few understand is overwhelming today the least. Below is a link for newly diagnosed patients: https://www.bronchandntm.org/For-Patients/Learn-More/Diagnoses-and-Evaluation/Newly-Diagnosed 

Below is a video on NTM Lung Disease: https://social.bronchandntm.org/resources/detail/17

Below is Part 2 of the video series which includes medications and more:https://social.bronchandntm.org/resources/detail/18

We are here to support you on your journey- you are not alone. Please ask any questions you may have. 

Hello all. Four months ago, a chest CT scan showed that I have BE with a suspected NTM infection and a lung cavity. This was a huge shock because I am very active, fit and otherwise healthy. I was regularly swimming 1.5 miles/wk and walking 25 miles/wk with no breathing issues. I only had a very mild occassional cough.  Over the past 4 months, I have had many additional tests and a second CT scan confirming pulmonary M. Abscessus infection (cavitary form). My doctor recommends starting treatment with oral Clofazimine, inhaled Amikacin and oral Omadacycline. Needless to say, I am overwhelmed and scared about this disease, the notoriously stubborn infection, and the side effects from the intense treament. Is there anyone out there who has had experience with this bacterial strain and this antibiotic regimen?  

Hi Megster. 

Nausea is one of the most common side effects of taking multiple antibiotics. I have had patients say that they use ginger candy or tea to help settle the queasiness of the tummy.

Also, if your nausea gets too bad, reach out to your health care provider. There may be some prescription antinausea medicines that may be helpful. 

After being on the three antibiotic regimen for MAC the last month, a low grade queasiness is my constant companion . Yes, I take the meds with a bit of food which helps the stomach pain, but nothing has helped the nausea feeling which is present even on the days I don’t take the meds. Anyone else deal with this? How have you coped? It’s quite discouraging and definitely doesn’t help the already reduced appetite. Thanks ! 

Das23,

I love reading about your hikes. I do short walks on trails and no longer go on longer hikes for several reasons.  You inspire our group on a regular basis with your workouts. 

I train on weight machines at least 2 mostly 3 days a week. I use a stationary bike that exercises arms and legs 3-4-5 days a week. Now that it's not so hot I'll be back on the hiking trails a couple days a week---Keeps me going

Hello! This week is Telehealth Awareness Week, and its goal is to highlight the transformative impact of telehealth on patient care. This national campaign, organized by the American Telemedicine Association, promotes awareness and understanding of telehealth services across healthcare settings and specialties. Are you currently using telehealth? Some healthcare providers utilize this service beyond the initial visit; others do not utilize this service at all.  Please share your experiences, both good and bad, with our community. 

Maggie,

I agree with your words, “ scary but good”. Modern medicine is changing every day with the emergence of AI.

Maggie,

You are not alone… I enjoy yoga, walking but find weight lifting 🏋️‍♀️ a challenge. I have purple weights , awaiting me to pick them up but I just can’t get into regular weight lifting as well.  We can encourage one another to get lifting:) 

TomK,

Hello! I am so glad you were able to enjoy a week at the beach and you were able to protect yourself from the sun. Thank you for sharing your experience with the community. Hopefully, the process for obtaining Clofazamine will get easier in the near future. 

TomK,

Hello! It sounds as if you are in great hands. Some pulmonologist wait awhile before enlisting the support of an Infectious Disease doctor. I am so glad you are getting the healthcare you need and deserve. 

Well, it has been 3 weeks on clofazimine. No major issues to report except for it can upset your lower tract on occasion. We live not too far from the AL Gulf beaches. Our family spent Labor Day week there. I bought some log sleeved SPF 50 shirts, wore a hat and used plenty of sun screen on all exposed flesh regularly and never had an issue with sunburn. Your mileage may vary. Getting the RX had to be accomplished through the ID doctor for it is not distributed by the manufacturer in the US.

The pulmonologist referred me to the ID doctor the same day I was given the diagnosis of m. abscessus. The pulmonologist does the lung capacity testing, takes X-rays, initiates CT scans and does the bronchoscopies when asked by the ID doctor. The ID doctor works with him when the results come back on the samples gathered to find out which medication will work the best.  During the treatment period the ID doctor does regular bloodwork to check if there is any issues with the drugs to the kidneys and the liver. She also will get aggressive with the insurance companies when they turn a procedure or a medication down, and she usually wins. I am currently on my third round of antibiotics for NTM. I probably see the ID doctor 2 to 3 times more than the pulmonologist. 

All good info. I think a lot of people assume

when their sputum is anything but white or clear they definitely have an infection and panic. Know your own body, triggers and keep in close contact with your Dr. 💯 

All of that so very important. Consistency is the key. I work all areas and pay close attention, trying not to ignore any of it. Pace and protect to the best of my ability. 

Always so important, but not always easy. I know it should be priority but I find strength training the hardest part to be consistent with. I do Yoga daily but getting on that elliptical machine and using my weights is more difficult to stick to. Being tired vs pushing through knowing I’ll get stronger…ugh. I already have severe osteoporosis so I know the importance. It’s the one area I struggle with. 😔