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What to Expect After a MAC Diagnosis

Reviewed by: HU Medical Review Board | Last reviewed: December 2022 | Last updated: January 2023

Being diagnosed with MAC lung disease is overwhelming for many people. The good news is that most infections with Mycobacterium avium complex (MAC) bacteria respond to prescription drugs (antibiotics) if they are taken as planned. With treatment, typical MAC lung disease is cured in more than 80 percent of cases.1

However, treating more severe cases is harder. Also, relapse of the original infection or reinfection may occur in up to one-half of people who were previously cured. Reinfection happens when someone is infected again, this time with MAC bacteria that has become resistant to antibiotic drugs.1

The best way to ensure your treatment plan is successful is to work with your doctor. They can answer any questions that come up and monitor your treatment response. They can also adjust the plan if needed to help create something you can stick with over time.

Making the decision to treat

Not everyone with MAC lung disease will treat it right away. In some cases there are no symptoms or they are mild. Since the antibiotics used to treat it have many side effects and need to be taken regularly, some people wait to start treatment.1-3

However, without treatment, half or more cases will progress within 2 to 10 years. This means that most people will eventually need to treat their MAC lung disease.1-3

You and your doctor will take several factors into account when making a decision about treatment. These include whether you:1-3

  • Have more severe disease with more areas of the lungs impacted
  • Have other medical issues that need attention first
  • Have cavitary lung damage (holes or pockets in the lungs)
  • Are very thin
  • Are over 65
  • Take any other drugs

If you are waiting to treat your MAC lung disease, regular follow-up care is needed. Most doctors will test your saliva and mucus (sputum) every few months. They may also do chest imaging tests like X-rays or computed tomography (CT) scans every 6 months or so. If there are signs your MAC lung disease is getting worse, it may be time to start treatment.1-3

Types of treatment for MAC lung disease

For most people, the first line of treatment is with antibiotic drugs. But there are also other treatment options that can be used instead of or along with these drugs.2

Antibiotics

Antibiotic drugs attack MAC germs. However, it is possible for MAC germs to change to avoid being attacked. If a germ changes to the point where a drug does not work on it anymore, this is called drug resistance.1-5

To prevent antibiotic resistance, people with MAC lung disease take several drugs together. Treatment plans may include between 2 and 4 different drugs. An example treatment plan might be taking the drugs azithromycin, rifampin, and ethambutol together.1-5

Your doctor will tell you how often to take your drugs. To prevent drug resistance, follow their instructions exactly and do not skip doses. Resistant germs are harder to treat. These infections require additional drugs.1

A successful treatment course can cure MAC germs in about 3 to 6 months. However, treatment continues for 12 months after your sputum tests are negative to reduce the risk of relapse. This means that a full course of treatment can be 15 to 18 months or more.1,2

There are several possible side effects of drug treatment for MAC lung disease. These side effects may include:1,6

  • Stomach issues, such as nausea or diarrhea
  • Vision or hearing changes
  • Liver or kidney problems
  • Dizziness
  • Low blood cell counts
  • Changes in the way the heart beats
  • Pain

Other treatments and therapies

Surgery may be an option in cases where drugs are not working or where lung disease is in a specific area. This surgery is called a lung resection. In a resection, the area of the lung that has the disease is taken out. Antibiotics are used after that to clear any remaining germs.1,2

Airway clearance techniques are also helpful to clear out mucus before or during treatment. These may include:1,5

  • Chest physical therapy
  • Controlled coughing
  • Inhalers
  • Postural drainage
  • Vibrating vests can also be helpful in clearing mucus

Treatment monitoring

Once you start treatment, your doctor will monitor you closely. They will get baseline tests like blood counts or liver function tests. Depending on what drugs you are taking, other tests may be needed, too. These may include vision tests, hearing tests, and tests of your heart rhythm (EKG) to monitor for side effects.1

Each person’s case will be different, but most will see their doctor every 1 to 2 months to monitor for treatment issues and success. Sticking to your treatment plan, treating other underlying health issues, and reducing exposure to MAC germs can all help prevent relapse or reinfection later.1

Quality of life effects

Living with MAC lung disease and navigating treatment can be hard and scary. The side effects from drugs used in treatment can also be frustrating or uncomfortable. Depending on your treatment or symptoms, daily activities may become a challenge, too. It is not uncommon for people with MAC lung disease to feel depressed or anxious.5

If you are feeling this way, you are not alone. Talk with your doctor or a mental health counselor to come up with strong coping strategies. Consider joining a support group, either in person or online. You can search online or ask your healthcare team about groups they know of.

Eating well and safely exercising also can help improve your mood and help your body fight MAC to the best of its ability. Your doctor can connect you with a dietician, nutritionist, or physical therapist if you need extra support.7

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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