Overview
Pulmonary non-tuberculous mycobacterial (NTM) infection is a lung disease caused by a group of bacteria called non-tuberculous mycobacteria. These are bacteria found naturally in soil, water, and dust that are related to the germ that causes tuberculosis (TB) but are different organisms. Unlike TB, NTM lung infections are not spread from person to person. The bacteria enter the lungs through breathing in contaminated water droplets or soil particles. Not everyone exposed to NTM gets sick — the infection tends to develop in people whose lungs are already damaged or whose immune systems are weakened. Common symptoms include a chronic cough that does not go away, coughing up mucus or blood, fatigue, shortness of breath, fever, night sweats, and unintended weight loss. The disease can progress slowly over months or years, and some people may not realize they are sick for a long time. Two main patterns of lung disease are recognized: a form with cavities (holes) in the upper lungs, often seen in older men with a history of smoking or lung disease, and a nodular bronchiectatic form more commonly seen in older, thin women without prior lung disease (sometimes called Lady Windermere syndrome). The most common NTM species causing lung disease is Mycobacterium avium complex (MAC), followed by Mycobacterium abscessus and Mycobacterium kansasii. Treatment typically involves a combination of multiple antibiotics taken for 12 to 18 months or longer. Treatment can be challenging because NTM bacteria are naturally resistant to many antibiotics, and side effects from long-term therapy are common. Some patients with severe or localized disease may benefit from surgery to remove the affected part of the lung. While some genetic susceptibility factors have been identified, this is primarily an infectious disease influenced by host factors rather than a single-gene genetic disorder.
Also known as:
Key symptoms:
Chronic cough lasting weeks or monthsCoughing up mucus or phlegmCoughing up bloodShortness of breathFatigue and low energyUnexplained weight lossFeverNight sweatsChest painWheezingRecurrent lung infectionsLoss of appetiteGeneral feeling of being unwell
Clinical phenotype terms (21)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsThe University of Queensland — PHASE2
Eighth Affiliated Hospital, Sun Yat-sen University
Seoul National University Hospital
Vancouver Coastal Health — PHASE1
University College, London — NA
Bin Cao — PHASE4
Bin Cao — PHASE4
Research Center Borstel
Kevin Winthrop — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
3 availableSIRTURO
SIRTURO is a diarylquinoline antimycobacterial drug indicated as part of combination therapy in the treatment of adult and pediatric patients (2 years and older and weighing at least 8 kg) with pulmon…
SIRTURO is a diarylquinoline antimycobacterial drug indicated as part of combination therapy in the treatment of adult and pediatric patients (2 years and older and weighing at least 8 kg) with pulmonary tuberculosis (TB) due to Mycobacterium tuberculosis resistant to at least rifampin and isoniazid
Mycobutin
Rifabutin capsules are indicated for the prevention of disseminated Mycobacterium avium complex (MAC) disease in patients with advanced HIV infection
Arikayce
indicated in adults, who have limited or no alternative treatment options, for the treatment of Mycobacterium avium complex (MAC) lung disease as part of a combination antibacterial drug regimen in pa…
indicated in adults, who have limited or no alternative treatment options, for the treatment of Mycobacterium avium complex (MAC) lung disease as part of a combination antibacterial drug regimen in patients who do not achieve negative sputum cultures after a minimum of 6 consecutive months of a multidrug background regimen therapy
Treatment Centers
8 centersNationwide Children's Hospital
📍 Columbus, Ohio
University of Alabama at Birmingham
📍 Birmingham, Alabama
University of Pittsburgh Medical Center
📍 Pittsburgh, Pennsylvania
Johns Hopkins University
📍 Baltimore, Maryland
National Jewish Health
📍 Denver, Colorado
University of Texas Southwestern
📍 Dallas, Texas
Medical University of South Carolina
📍 Charleston, South Carolina
Harvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
Financial Resources
2 resourcesRifadin I.V.
Hoechst Marion Roussel
Travel Grants
No travel grants are currently matched to Pulmonary non-tuberculous mycobacterial infection.
Community
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Start the conversation →Latest news about Pulmonary non-tuberculous mycobacterial infection
Disease timeline:
New recruiting trial: Treatment Monitoring for NTM Infections With a Symptom Diary
A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection
New recruiting trial: Improving the Outcomes of Children With Tuberculosis Through Innovative Diagnostics and Treatment Monitoring
A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection
New recruiting trial: Mycobacterial Lung Diseases in Virginia: Sequencing and Clinical Determinants of Relapse and Outcome
A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection
New recruiting trial: Prevention of Ototoxicity in NTM Patients Treated With IV Amikacin
A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection
New recruiting trial: Biomarkers of Phage Treatment Response in NTM and Other Infections
A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection
New trial: Health Impact of Non-Tuberculous Mycobacteria Pulmonary Disease (NTM-PD)
Phase NA trial recruiting.
New trial: IV Gallium Study for Patients With Cystic Fibrosis Who Have NTM (ABATE Study)
Phase PHASE1 trial recruiting. Gallium nitrate
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What species of NTM is causing my infection, and how does that affect my treatment plan?,How long will I need to take antibiotics, and what side effects should I watch for?,Should I be tested for any underlying immune or genetic conditions that might make me more susceptible?,What lifestyle changes can I make to reduce my risk of reinfection or worsening?,How often will I need follow-up tests like sputum cultures and CT scans?,Is surgery an option in my case, and what are the risks and benefits?,Are there any clinical trials or newer treatments I should consider?
Common questions about Pulmonary non-tuberculous mycobacterial infection
What is Pulmonary non-tuberculous mycobacterial infection?
Pulmonary non-tuberculous mycobacterial (NTM) infection is a lung disease caused by a group of bacteria called non-tuberculous mycobacteria. These are bacteria found naturally in soil, water, and dust that are related to the germ that causes tuberculosis (TB) but are different organisms. Unlike TB, NTM lung infections are not spread from person to person. The bacteria enter the lungs through breathing in contaminated water droplets or soil particles. Not everyone exposed to NTM gets sick — the infection tends to develop in people whose lungs are already damaged or whose immune systems are weak
How is Pulmonary non-tuberculous mycobacterial infection inherited?
Pulmonary non-tuberculous mycobacterial infection follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Pulmonary non-tuberculous mycobacterial infection typically begin?
Typical onset of Pulmonary non-tuberculous mycobacterial infection is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Pulmonary non-tuberculous mycobacterial infection?
Yes — 11 recruiting clinical trials are currently listed for Pulmonary non-tuberculous mycobacterial infection on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Pulmonary non-tuberculous mycobacterial infection?
25 specialists and care centers treating Pulmonary non-tuberculous mycobacterial infection are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Pulmonary non-tuberculous mycobacterial infection?
4 patient support programs are currently tracked on UniteRare for Pulmonary non-tuberculous mycobacterial infection. See the treatments and support programs sections for copay assistance, eligibility, and contact details.