Treating and Managing NTM Lung Disease

How It's Treated

If you are diagnosed with NTM lung disease, you will work with your doctor to make decisions about your treatment options. How NTM is treated depends on the type of organism causing the infection, the severity of your symptoms and your health history. Because NTM can be challenging to get rid of, you should consider finding a pulmonologist or infectious disease specialist with experience treating people with NTM lung disease.

Treatment of NTM lung disease varies from person to person. Not everyone who is diagnosed with NTM lung disease needs to begin treatment right away. Some localized infections are very slow-growing and may or may not progress. If that is the case, your doctor might recommend a watchful waiting period before starting treatment. You would then be monitored with regular follow-up exams to catch any change in your condition before it causes further damage to your lungs.

If your symptoms are severe, or you have the cavitary form of NTM lung disease, your doctor may want to begin treatment immediately. The standard treatment for most NTM infections is a combination of two or more antibiotics, taken over many months. The specific drugs you are prescribed will depend on the NTM species involved, and whether or not the organism has developed any antibiotic resistance. The progress of your treatment will be monitored by collecting follow-up sputum samples. Your disease will only be considered cured when your samples show no sign of NTM infection for at least 12 months. This is to help make sure that your disease does not come back.

Antibiotic therapy for NTM lung disease can be challenging. Patients may have difficulty keeping up with their prescribed treatment regimen over long periods of time. Side effects from the medications are common, and some individuals may not be able to tolerate some forms of treatment. It is very important to stay in close communication with your healthcare team about your treatment, and any side effects you are experiencing. Do not stop taking antibiotics on your own. It is important to discuss any changes to your prescribed treatment with your doctor because of the potential risk of drug resistance or lowered efficacy.  An experienced NTM care team can work with you on finding an alternative approach that works for you.

In some cases, surgery may be a good treatment option. NTM lung disease caused by M. abscessus is usually treated with surgery to remove the infected portion of the lung, followed by drug treatment.  MAC patients may also benefit from surgery to remove isolated infections, to stop persistent bleeding, or to remove the most damaged areas of the lung. In most cases, surgery can be performed using minimally invasive techniques. Your doctor will discuss with you if surgery is a good treatment option in your situation.

Managing the Disease

No matter what type of NTM lung disease you have, or how it is being treated, there are many things you can do to ease your symptoms and improve your overall health and well-being.

Taking care of your lungs is critically important to your recovery, especially if you also have bronchiectasis, COPD or another chronic lung disease. Some proven-effective recommendations are:

• Airway clearance techniques are used to reduce the mucus buildup in your lungs and airways. This helps prevent new infections, reduce uncontrolled coughing and improve breathing ability. Chest physical therapy, nebulized hypertonic saline, postural drainage, oscillation vests, chest percussion devices and controlled “huff” coughing can all be used to thin, loosen and expel thick mucus.
• Preventing infections through good hygiene and regular immunizations against influenza and pneumonia, both of which can cause severe complications for people living with NTM and other lung diseases.
• Avoiding exposure to smoke and other lung irritants helps to reduce inflammation that can worsen lung disease. If you are a smoker it is especially important that you quit as soon as possible.

Other healthy behaviors that will help you manage your NTM disease include:

• Exercise to build your endurance, strengthen your breathing ability and lift your mood.
• A well-balanced diet to help you maintain a healthy weight and get the nutrients you need to fight your infection.

NTM lung disease is a serious infection that can have a significant impact on your life and that of your families and friends. Depression and anxiety are common, and you should feel comfortable discussing these feelings with your doctor and asking for help with treatment and support when you need it.

You will also want to take some steps to reduce your exposure to NTM in your environment. Although it would be impossible to completely avoid these common organisms, there are some basic precautions you can take:

• Raise the temperature of your household water heater to at least 130° F.
• Use a vent fan in your bathroom, kitchen and other steamy areas
• Stay away from hot tubs, spas and other recirculating hot water sources indoors
• Wear a dust mask when working in the yard
• Wet down potting soil to reduce dust

Finding Support

The Lung Association recommends patients and caregivers join our Living with Lung Disease Support Community to connect with others facing this disease. You can also call the Lung Association’s Lung Helpline at 1-800-LUNGUSA to talk to a trained respiratory professional who can help answer your questions and connect you with support.

Ask your healthcare provider about lung disease support groups in your area, or look online for a Better Breathers Club near you.

For More Information:

• Visit the NTM Info & Research website, the not-for-profit foundation for patients with NTM disease.