Discussions

Hello!  Are you up to watching a short video on immunizations? Immunizations are usually administered in early autumn;  it is a good time to review the basics of vaccinations. Dr.David Mannino, pulmonologist and co- founder of the COPD Foundation reviews the different vaccinations for the BNTM community: https://social.bronchandntm.org/resources/detail/4   Please let us know if you have any questions. 

The NTM Management Tool—is a practical resource designed to help patients stay organized, informed, and actively involved in their care.

Whether you’re tracking symptoms, medications, airway clearance, sputum cultures, appointments, or questions for your healthcare team, this tool can help make managing your journey a little easier.

 Every symptom tracked tells a story. Every question asked empowers better care. Take control of your health—one day, and one step at a time.

💙 Have you tried using a management tool to stay organized? We’d love to hear what has helped you most in your NTM journey.

https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf

Clinical Research Studies are closely monitored by physicians, regulators, and data safety monitoring boards. It is important to review the details of the Informed Consent Form given to you by the research staff members and ask questions before signing it. You are not required to continue with the study if you decide to withdraw after starting it. Your involvement can help develop new drugs and treatments for the community.

Current research studies are posted on the BNTM Association 360, https://www.bronchandntm.org/For-Patients/Participate-in-Research/Research/Participate-in-a-Study. The current listing includes:  The AIRTIVITY® Study is looking to see if an investigational medicine – designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. To find out how to take part in this clinical trial, please visit https://airtivity.researchstudytrial.com/?r=9

How do I find other clinical trials?  www.clinicaltrials.gov

If you have any questions, please call the Bronchiectasis and NTM Information Line: 1-833-411-LUNG (5864) or email contactus@bronchiectasisandntm360.org

Clinical trials are done to test treatments or therapies for specific diseases such as NTM and bronchiectasis. These trials help us to understand what works and what does not. Clinical trials challenge current treatments or standards of care for the advancement of care. Suggested questions to ask before beginning a research trial:

Participation

• What is the purpose of the trial?

• How will this treatment be different from what is currently being used?

• How long will I be in the trial?

• How many visits will I need to make to the hospital or clinic?

• What kinds of tests and treatments are involved?

• How will the doctor know if the treatment is working?

• Who will oversee my care?

• Who can answer questions I have during and after the trial?

Risk and benefits

• What are the possible side effects or risks of the new treatment?

• What are the possible benefits?

• How do the possible risks and benefits of this trial compare to those of the current treatment?

Rights and costs

• How will my health information be kept private?

• If I decide to leave the trial, what other options will I have?

• Who can help answer questions from my insurance company?

• Are there any out-of-pocket costs if I take part in the trial?

• Are there payments for participating or to cover travel?

Please let us know if you have any questions.  I will continue to post more information on clinical trials throughout the week. Please stay tuned. :)

Participating in a clinical trial helps researchers address important questions and learn more about NTM lung disease and bronchiectasis. It also contributes to better, safer, and more effective treatments. There are four phases carefully designed to study participants in a clinical trial to evaluate the safety and effectiveness of new drugs, medical devices, and treatments. Below is a summary of what occurs at each phase of a clinical trial.

• Phase I – Explores whether a treatment is safe in a small group.

• Phase II – Evaluates whether a treatment is useful in a larger target population. Researchers continue to monitor safety and assess how well the treatment works at different doses.

• Phase III (registration) – Explores how the new treatment compares to existing treatments and side effects in a much larger group. This phase also evaluates the new treatment’s effectiveness, safety and correct dose. Information from Phase I-III is used for U.S. Food and Drug Administration (FDA) approval and regulatory agencies in other countries.

• Phase IV – Monitors long-term safety, interactions with other medications, and efficacy in real-world use.

Clinical trials take time to complete, and the enrollment process can be slow due to limited eligibility. Trials begin with pre-screening, followed by obtaining informed consent from participants. Informed consent confirms your knowledge of the procedure or treatment, possible risks, and benefits. Individuals may undergo screening for eligibility for a specific research study. If approved, the participant can enroll in the study. Monitoring for safety occurs throughout and after the study concludes.

Have you participated in a clinical trial? Would you like to share your experience with the community?

💙 Hope Starts with Knowledge.

For individuals and caregivers living with BNTM, learning about clinical trials can lead to better outcomes by giving eligible participants access to promising investigational therapies under careful medical supervision.

Participation is always voluntary, and every study has specific eligibility criteria. The best first step is to talk with your healthcare team to see whether a clinical trial may be right for you.

Every breakthrough in medicine begins with people who choose to advance research. Patient involvement helps researchers better understand the disease, identify unmet needs, and develop treatments that reflect what matters most to those living with BNTM. Whether you participate or simply help spread awareness, you are contributing to a future filled with more hope and more treatment options.

Progress happens because of a community that shows up, supports one another, and believes that better treatments—and brighter tomorrows—are possible. Together, we're moving science forward—one step, one study, one patient at a time. I will be posting information on clinical trials and current trials throughout the week.  Please stay tuned and let us know if you have any specific questions on clinical trials.💙

Pharmacies are known for giving long patient instructions with each prescription that you purchase.  Some healthcare professionals take the time to review potential adverse effects when prescribing medications; others do not. Many individuals can tolerate antibiotics, while others cannot. Drug tolerability is based on many factors- your healthcare provider must be informed of all current drugs and supplements that you are taking. Below is a basic review of things to be mindful of while taking Levofloxacin and Moxifloxacin.

• Levofloxacin and Moxifloxacin can cause inflammation of tendons. If you experience “joint pain” while taking these medications, it is probably a sign of tendon inflammation, and the antibiotic should be stopped.

• These drugs can also cause abnormalities in the heart conduction system, known as the prolonged QT interval. It is a good practice to have a baseline EKG in your medical files so you can use it for a comparison if you should experience any issues.

• These drugs have a “caffeine effect” and can interfere with sleep. Reducing or eliminating caffeine while taking this drug will result in better sleep.

• Do not take within 2 hours of dairy, antacids, or vitamin and calcium supplements.

Have you had a negative side effect with these drugs that you would like to share with the community? 

I am new to this diagnosis and would love to see how many usually do the medications and what can you suggest for nutrition tips?  Any information or places to look on this site would be appreciated.  I have not watched all the educational resources yet.  Thank you!

Can anyone explain to me why many of the prescriptions, such as inhalers list as a side effect “upper respiratory  infections” or “pneumonia”.  Isn’t the reason we are taking these medications to avoid such conditions?  Also can anyone tell me what inhalers really works well for them?  Insurance doesn’t cover many of them. 

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?

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

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

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

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. 

I started taking the newly approved BE medicine Brensupri in February of 2026.  I'm interested in any feedback from others who are also using this medicine.

Thank you

If anyone is on Brinsupri, I would love to hear your expeience

My pulmonologist has recommended that I try Brensocatib which has just been released as a treatment for nonCF bronchiectasis.

NTM question

I started MAC treatment in March but I had to stop in June due to tachycardia. Now I'm waiting for my pulmonologist to come up w a new treatment plan. I've been off treatment for a week now. I'm worried about not being on treatment.

What treatment is available if the big 3 used for MAC causes tachycardia. Are there other options?

Common side effects include a metallic taste and an upset stomach . The link below goes into greater details about this drug: https://www.drugs.com/clarithromycin.html

Please let us know if you have any questions.

Ethambutol is best taken on an empty stomach, 1 hour before breakfast. Do take the full dosage of 2-3 pills at the same time- do not divide the dosage throughout the day.
Lab tests- a CBC( cell blood count) and a Biochemistry panel should be done monthly, especially checking for liver function.
It is important to be under the care of an ophthalmologist or a neuro- owhile on Ethambutol. It is recommended to read small print daily- if blurry vision occurs two days in a row- stop the Ethambutol and see your ophthalmologist as soon as possible.
( NTM Patient Course, Management of Medication Side Effects, Dr. Gwen Huitt)

It is recommended that you have your hearing checked at least every 6 months or much more frequently if you already have a hearing loss.