Discussions

Are you familiar with the drug Clofazimine?  Clofazimine is used for the treatment of some strains of NTM infections. Common side effects include stomach upset in some individuals and gradual skin tanning. The skin discoloration will begin to fade once the medication is discontinued. A baseline EKG and periodic repeat testing should be done while on this medication. Clofazimine is not commercially available in the U.S. for NTM infections. Access is through Novartis‑sponsored expanded access programs or FDA‑authorized SPINDs, with strict eligibility, documentation, and manufacturer cooperation requirements. Your healthcare provider will get this approval process started for patients in need of this drug.  Have you taken Clofazimine? If yes, do you want to share anything with the community about this drug?

I have a pulmonologist who has a stellar reputation in my area, but bedside manner is much to be desired. I went to him recently after a two day hospital stay with pneumonia. In the “15”minutes he saw me. Standing as if hurry up. He had not  looked at any of the results from the hospital. (Which I made sure were sent to him) he ducked  out briefly to have a look. Didn’t have much to say. When I asked if the pneumonia was  gone. He said “probably”. Without even checking my lungs. Ushered me out to the front desk to schedule  a few procedures (lung function and xray.) I know people will suggest find another doctor. Well good luck with that. Impossible. In fairness I know these doctors are overwhelmed and it seems the shortage of doctors puts a heavy load on them. And I’m sure he’s a very qualified doctor. But everyone dealing with this needs to feel heard and relevant. Fortunately I have another pulmonologist in Florida. (Snow bird) who is the exact opposite. Takes time, reviews results  That’s my rant!!  Sorry ☹️

June is National Safety Month! One important way you can stay safe is by making sure you're prepared for an emergency. Disaster preparedness is extra important when you have a chronic lung condition. You may have to consider access to medications and other medical needs, as well as essentials such as food and water. Do you have a plan in place to stay safe and look after your lung health during a disaster?

Check out the Disaster Preparedness Plan booklet, which walks you through the process of planning for a natural disaster. It also includes handy resources including a page to organize emergency contact information, a list of questions to ask your doctor, and checklists for packing "go" and "stay" kits with everything you'll need in case of an emergency.

Hello! Are you currently taking Rifampin?  Rifampin is an antibiotic used to treat NTM/MAC infections. Understanding the role of a drug, the dos and don'ts, and its side effects may make your drug therapy a little easier.

• Individuals are advised to take it on an empty stomach

• It is recommended to take this medication at bedtime with a saltine cracker and just a few sips of water.

• Rifampin may interact with other medications (ex. thyroid medications, oral contraceptives). Please review all medications and supplements with your doctor and/or pharmacist.

Monitor Labs: Liver functions, white blood cell, and platelet counts.  Your healthcare provider will order these tests regularly while you are on this drug.

Avoid alcohol- I realize that most printouts from the pharmacy advise you not to drink while on antibiotics, but I would really take this warning very seriously.  I had half a glass of wine on my birthday when I first started taking Rifampin years ago, and I felt really wobbly, off-balanced afterwards.

Potential Side Effects: I am not listing the side effects below to frighten you but to educate you on what may be normal and what may be a reason to seek medical care. Please report any adverse effects to your healthcare provider and do not wait until your next appointment. You may have to get labs done and discontinue the drug.

• Orange/red urine/ saliva and tear secretions- this is normal, and it will disappear once you finish the drug. You may want to avoid wearing light colored clothing and contact lenses while you are taking this drug.

• Yellowing of the eyes/skin can be a sign of liver problems that require immediate medical attention.

• Mental/mood changes

• Unusual tiredness

• Flu-like symptoms: joint aches, fever

• Rash

• Persistent nausea/vomiting

• Stomach/abdominal pain

Have you experienced adverse side effects with Rifampin? Were you able to continue taking the drug, or did you have to discontinue the drug? Rifabutin is another antibiotic that may be prescribed if you are experiencing adverse effects. Please share your experiences with the BNTM community. 

Ethambutol is an antibiotic used for treating a NTM/ MAC infection. Individuals are advised to take with or without food; do not take with aluminum-containing antacids.

Potential Side Effects

• Rash
• GI upset- do not forget to tell your healthcare provider if you have lost weight over time
• Neuropathy
• Eye problems, such as Optic Neuritis, are seen more in older patients with kidney failure issues.  An episode of optic neuritis typically begins with eye pain, especially with eye pain- this appears like a thumbprint or a smudge that blurs the vision. Within a week, this may progress to a darkening of the visual fields. Reading can become difficult.  Many patients notice that colors appear less bright in the affected eye. It is important to schedule and maintain appointments with an ophthalmologist experienced in Optic Neuritis. Report any changes in vision to your doctor immediately and stop taking the drug.

I took Ethambutol in the past and maintained regular visits with a neuro-ophthalmologist. I was fortunate to be able to take this drug without any adverse side effects. If you have taken Ethambutol, please share your experience with the community.

http://Brighamandwomens.orgneurology/neuro-opthamology/optic-neuritis

Hello, Can you share where we can find the webinar recordings? I'm interested in listening to the topic on medications again. Thank you very much!

Living with bronchiectasis, NTM lung disease, or other chronic respiratory conditions can take a significant mental and emotional toll. Many men report dealing with isolation, anxiety about breathing symptoms, treatment fatigue, loss of physical capacity, and concerns about work or family responsibilities. Too often, men feel pressure to "push through" in silence. But mental health is just as important as lung health.

If you're living with bronchiectasis or NTM: ✅ Talk openly about how you're feeling ✅ Stay connected with supportive people ✅ Celebrate small victories and progress

Seek help from a mental health professional if needed. For counseling, support groups, and mental health education, NAMI (National Alliance on Mental Illness) offers information on most mental health challenges: https://www.nami.org/

When searching for a therapist, consider looking for someone with experience in: Chronic illness, Health anxiety, Acceptance and Commitment Therapy (ACT), and Cognitive Behavioral Therapy (CBT) for chronic disease. Psychology Today’s support group locator -use this filter to find a professional in your area.   https://www.psychologytoday.com/us/therapists/co/denver.  You have to enter your state's ZIP code.

Your mental well-being matters, and you don't have to face this journey by yourself. How do you get the most support from others? Do you feel understood by family and friends on challenging days, such as a flare-up?

Why Do So Many Men Put Off Going to the Doctor?

Many men delay or avoid healthcare visits, often waiting until symptoms become serious. While it may seem harmless to "wait it out," postponing care can lead to missed early detection, worsening chronic conditions, higher treatment costs, and a reduced quality of life.

Common reasons men delay healthcare include:

🔹 Cultural and Social Pressures – Seeking medical help is sometimes viewed as a sign of weakness, causing men to ignore symptoms or push through pain.

🔹 Stigma Around Vulnerability – Discussing personal or sensitive health concerns can feel uncomfortable, leading some men to avoid appointments altogether.

🔹 Perceived Lack of Urgency – Many believe health concerns can be addressed "later," even when early intervention could make a significant difference.

🔹 Time and Access Barriers – Busy work schedules, family responsibilities, insurance challenges, and difficulty navigating the healthcare system can make routine care feel overwhelming.

🔹 Discomfort with Healthcare Settings – Doctor visits, paperwork, waiting rooms, and discussing personal issues can feel intimidating, especially without an established primary care provider.

🔹 Financial Concerns – Costs such as co-pays, deductibles, or lack of insurance may discourage men from seeking care.

🔹 Underestimating Health Risks – Many chronic conditions develop gradually with few noticeable symptoms, making regular checkups essential for early detection.

The good news? Small steps can make a big difference. Regular checkups, preventive screenings, and open conversations about health can help men stay healthier and catch problems before they become serious. Your health is worth the time. Don't wait for symptoms to become a crisis.

How are you going to encourage a family member or a friend to seek healthcare? Sharing your suggestions may help another member of this community. 💙

💙 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?

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

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

Hello! Learning about new medications and potential side effects can be overwhelming.  Do you have any questions about any of the medications that you are currently taking?  Below is a link to the basics of inhalers and nebulized medications: Medicines | Bronchiectasis and NTM Association

Welcome, June 💛June brings longer days and warmer light — but it also brings us another chance to heal and to hold space for one another. Sometimes it’s in the way we keep showing up, even on the hard days. It’s in the courage to share our stories, knowing someone out there will feel less alone because of it.

A fresh month, a fresh chapter begins. Throughout the month,we will focus on the following topics:

We’re walking into June together — and that makes all the difference. Let’s fill these days with sunshine and moments that make our hearts smile. What’s one hope you’re carrying into this month? Please share it below so we can cheer you on. 😍

Do you feel misunderstood by friends and family since you look good?  The blog article below, Facing The Challenges of NTM Lung Disease , may give your friends and family better insight into what you are dealing with. The blog article contains information about the diagnosis, treatment options, and preventive strategies. Please let us know if you have any questions.

You are invited to take part in a short survey to help us better understand how people with chronic lung conditions navigate Medicare and access treatments.

Your insights will help us:

• Identify what’s working well
• Better understand common challenges
• Create tools and resources that truly support your needs

Whether you feel confident navigating Medicare or still have questions, your perspective matters.

Together, we can build solutions that make accessing care simpler and more supportive.

If you are 18+ and diagnosed with COPD, bronchiectasis, and/or NTM lung disease, take the survey now.

Hello!  Allergies can really take a toll on us at this time of the year. The blog article below reviews the common causes of post nasal drip and the treatment options. Please let us know if you have any questions. 

https://social.bronchandntm.org/articles/blog/Postnasal-Drip-in-the-Bronchiectasis-Patient

Hello! Memorial Day officially kicks off the start of the summer season.  I hope that you have some great plans scheduled.  If you are not feeling well and are unable to get out and about as you would like to, we are here to support you. 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 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.org to 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.

Below is a blog article on Summer Precautions- there has been an update on the time recommended to boil water that was mentioned in a previous post.  Please let us know if you have any questions.  I hope that you make the best of each day going forward. :)

Summer Precautions for People with Bronchiectasis and NTM Lung Disease

For many people living with bronchiectasis and NTM lung disease, allergy season can increase coughing, mucus, chest tightness, post-nasal drip, fatigue, and breathing irritation. Even “mild” allergies can place extra stress on sensitive airways.

Common allergy triggers may include:
• Pollen
• Mold
• Dust mites
• Strong fragrances & chemicals
• Smoke & poor air quality
• Pet dander
• Seasonal outdoor changes

Helpful reminders during high allergy days:
💧 Stay hydrated to help thin mucus
😷 Consider a mask outdoors during heavy pollen days
🪟 Keep windows closed when pollen counts are high
🧺 Wash bedding frequently in hot water
🚿 Bathe after being outside
🌬 Use air purifiers or clean HVAC filters if possible
💤 Prioritize rest and sleep

Always talk with your healthcare provider before starting new allergy medications or supplements, especially if you have multiple respiratory conditions. You are not alone in navigating the overlap between allergies and chronic lung disease. 💙

Does anybody have a pulmonologist in San Diego who they have found to be an expert in bronchiectasis? 

Hello! Early heat waves are occurring in parts of the USA today. Do you understand the meaning of the dew point, heat index and how it can impact individuals with respiratory issues? The blog article below defines such terms used by meteorologists that may assist you in better understanding the weather forecast.  Many people listen to the temperature only and do not pay attention to the dew point number. Being prepared for changing weather patterns will assist you in planning throughout the summer months.  Why Weather can Worsen your Lung Condition

Hello! Springtime can bring on an increase in respiratory symptoms for some individuals. Many respiratory symptoms overlap in different respiratory disorders. Do you understand what causes wheezing?  The blog article below reviews the causes of wheezing and treatment options.

Wheezing and the Bronchiectasis/NTM Patient

Please let us know if you have any questions. 

Hello! I have great news to report on the  time required to boil water to get rid of NTM. Jennifer Honda, PhD ,BNTM water expert presented an update at the recent NTMir Patent Conference. The research study, referred to as the BANTER study, Boiling Assessment of NTM in Tap Water Evaluation Regional, included top BNTM experts throughout the country including Dr. Joseph Falkinham , National Jewish Health and 7 other BNTM experts. The new recommendation is to boil water for 3 minutes!!! Wow! What a time saver. We don’t have to be concerned about boiling water for 10-15 minutes anymore when we are at home and or out and about. I look forward to hearing more positive updates that will lessen the time we need for daily therapies.