If tests have shown you have mycobacterium avium complex (MAC), a type of nontuberculous mycobacteria (NTM), you’ll need to work closely with your doctor to decide what to do next. Not everyone starts treatment right away. But this type of infection is hard to get rid of. Once you start treatment, you’ll need to stick with it for months or even years.
What Should I Expect From Treatment?
Treatment for MAC doesn’t always look the same for everyone. It depends on:
- Your symptoms
- How fast the infection is growing or if it’s getting worse
- Other conditions you may have
If it seems like your infection might be growing slowly and it’s only in one area, your doctor might suggest “watchful watching.” They’ll monitor you and the infection closely to see if it’s changing.
It’s also possible you’ll need to start treatment right away. This is more likely if you have severe symptoms or symptoms that aren’t going away. You’re also more likely to get treated sooner if your lungs show signs of damage or your infection is a cavitary type, meaning that your doctor can see nodules in your lungs.
Treatment for MAC is usually a combination of antibiotics. You’ll likely take two or more antibiotics together for a year or more. The specific medicine or combination of medicines may depend on what type of MAC bacteria you’ve got. It also will depend on whether any of the bacteria are resistant to certain antibiotics.
How Long Will I Need Treatment for MAC?
It usually takes a long time to get rid of MAC. You can expect to stay on treatment for at least 12 months. But it can take longer.
Once you start treatment, your doctor will keep watching you and the infection carefully. They’ll look to see if the bacteria are still there. The goal is no sign of the infection. To cure MAC, you’ll need to make sure you take your medicine as prescribed. Your treatment should continue until tests of your sputum (the mucus you cough up) come back negative for MAC for 12 months.
What About Side Effects?
Treatment for MAC may not be easy for you. Many people struggle to keep up with treatment over months or even years. Your medicines may come with side effects. Some people find it hard to tolerate certain antibiotics.
Common side effects of treatment for MAC include:
- Red-orange urine, stool, saliva, sweat, or tears
- Loss of appetite
Less common side effects of treatment include:
- Vision problems or eye pain
- Skin rash or itch
- Fever or chills
- Easily bruising
- Liver problems
- Tingling or numb fingers and toes
But most people do finish treatment. And you can, too. Just be sure you talk to your doctor about how you’re feeling. If you’re struggling with treatment, they can help you find ways to manage side effects and stay the course. Don’t stop taking antibiotics or other prescribed medicine without talking to your doctor first.
Why Do I Need to Stick With Treatment and What Happens if I Don’t?
If you forget a dose of your medicine, ask your doctor what you should do. Generally, you should take a missed dose as soon as you remember. But you might not want to double up. Be sure to follow your doctor’s advice.
If you decide to stop taking your medicine, the infection may come back or get worse. If that happens, it may be a more serious problem because:
- The bacteria may become resistant to treatment, which means antibiotics may no longer work if you start taking them again.
- Your infection may be harder to treat and get rid of.
- You may need to take even more medicine to get rid of the infection.
- The infection may be more likely to come back even after it looks like it’s gone.
What Else Can I Do to Feel Better and Stay the Course?
While you’re in treatment, there are other steps you can take to care for yourself and feel better:
- Ask your doctor about airway clearance techniques to help keep mucus from building up in your airways.
- Protect yourself from other infections by washing your hands and getting any recommended vaccines.
- Avoid smoke or other substances that might irritate your lungs.
- If you smoke, quit.
- Take good care of yourself by eating healthy foods, exercising, and getting enough sleep.
Depression and anxiety are common, and chronic health conditions can make it worse. If you’re struggling with your mental health, talk to friends, family, therapists, and your health providers to get the support you need to help you stay the course.
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European Respiratory Review: “Management of Mycobacterium avium complex and Mycobacterium abscessus pulmonary disease: therapeutic advances and emerging treatments.”
American Lung Association: “Treating and Managing NTM Lung Disease.”
Chest Foundation: “Nontuberculosis Mycobacteria (NTM).”
Asthma and Lung UK: “Non-tuberculous mycobacterial infection (NTM).”
Cleveland Clinic: “MAC Lung Disease.”