Your Treatment: The Emphasis on YOU!

Living with a mycobacterial infection requires a skilled and experienced medical team to design and implement a treatment protocol. The success of your treatment relies on YOU, your medical professionals, and your medicines.

Fortunately, you have the ability to play an active role in the progress of your treatment. You should be fully committed to wellness and seek the support of family and friends. Your lifestyle and routines may have to change. The changes you make are to improve your health and lengthen your life, and with a positive attitude these can be rewarding rather than burdensome.

Once you have fully discussed your condition and treatment plan with your doctor, you have the responsibility to implement your treatment and follow through with full commitment.

  1. Taking Medicines - You will likely need to take multiple medications. Take all of your medicines every day for as long as needed. Do not stop when you begin to feel better. The doctor will tell you when the bacteria have been controlled for long enough to stop taking your medicines. Your medications may have some side effects. Call your doctor to discuss any side effects to determine whether your medicines should be changed or the dosage altered. If you are having a severe reaction, call your doctor or pharmacist immediately. Try to tolerate mild side effects. They are less harmful than the long-term effects of uncontrolled NTM infections. (You can learn more about medications and side effects, and print out a medication schedule to help you keep track, in the “Patients” section of this website.) The American Thoracic Society (ATS) and Infectious Disease Society of America (IDSA) recommend standard treatment guidelines for pulmonary NTM diseases. Occasionally the standard therapy will fail or another combination of drugs will be recommended depending on the strain of NTM. In these cases, antibiotics may be added or changed.

  2. Types of Medicines

    1. Oral Medicines - Pills or liquid medicines taken orally (by mouth), usually one or more times daily as directed by your doctor. Make sure you understand what time of day to take the medicines, and whether they should be taken before, after, or with meals. You may have trouble swallowing pills. When taking them, don't tilt your head back. Instead, put your chin down to your chest and swallow the pills. You can also use soft food like applesauce; combine the pill with it and swallow.

    2. Intravenous (IV) Medicines - These types of medicines will be infused via a port or "picc" line and may be done in a hospital or at home. In some cases, IV treatments are relatively short in nature (a matter of weeks), but in some cases, may be of much longer duration. Be sure you know the frequency with which you are required to take these medicines. It is extremely important that you know how to care for any central catheter (port) or picc line to avoid introducing any other infections.

    3. Inhaled drugs - Some medicines may be inhaled directly into your lungs or nose, potentially minimizing side-effects or complications. These drugs include antibiotics, anti-inflammatory agents such as steroids, or bronchodilators. It is extremely important that you learn how to care for the nebulizer in order to maintain sterile conditions to avoid introducing other bacteria or infections into your lungs. Run the unit to clear and dry the tubing to avoid bacterial growth. Sterilize the nebulizer mouthpiece regularly, as directed by your doctor. Certain inhaled medicines may also be taken by metered dose inhalers, which are easier to maintain than nebulizers. It is very important that your doctor or respiratory therapist show you the proper way to use these inhalers so that you get the benefit of the full amount of medicine into your lungs or sinuses.

  3. Hearing, Vision and Other Testing - Some of the antibiotics your doctor may prescribe can affect your hearing or vision. For example, ethambutol may cause optic nerve damage that can only be detected by an eye exam; by the time you perceive a problem, it may be too late, so regular checkups are recommended. Other antibiotics may damage your hearing initially, in the high-frequency range, so you might not notice the damage until it has progressed. Ask your doctor about getting baseline tests on your hearing and vision when beginning treatment for NTM lung disease. For your vision, it may be advisable to see a neuro-ophthalmologist because the vision damage may require special training or equipment to detect. Patients with certain heart conditions may be at risk of developing a dangerous irregular heart rhythm when taking certain types of antibiotics. Speak with your doctor about getting evaluated for these conditions and having regular EKGs if taking one of these medications.
  4. Clear your lungs and sinuses (airway clearance)

    1. You and your doctor may have selected one or more ways to clear the mucus from your lungs. It could be chest physical therapy (chest PT) with postural drainage, use of an acapella or Aerobika, use of a pep valve or an inflatable electric vest, or inhaled saline solution. The respiratory therapist will likely teach you additional clearance methods including a deep or "huff" cough. Whatever methods of mucus clearance you have discussed with your doctor, please remember that every time you cough out infected mucus, there is that much less in your lungs to do damage and that much less for the antibiotics to overcome. Extra mucus can collect in your lungs and make you sick. Your doctor and respiratory therapist will decide which methods you should use and will teach you how to do them.

    2. Your doctor may have instructed you to do a sinus wash once or twice a day. If so, be sure that you know the correct procedure. The purpose of a sinus wash is to get rid of excess mucus and to prevent this mucus from draining into your lungs. It is extremely important to avoid using contaminated equipment that could introduce some other infection. A respiratory therapist will show you how to do the sinus wash. (Click here for sinus wash guidelines.)

  5. Drink copious amounts of fluid - Patients with NTM disease need more fluids. Fluid is essential for thinning mucus secretions, which in turn helps you clear mucus from your airways. It also helps your kidneys and liver process medications. Try to minimize drinks such as alcohol and coffee, tea or any other drink that acts as a diuretic and actually results in dehydration. Drink juice and water; when possible, combine juice with your water to get extra calories.

  6. Exercise - Exercise is important to help maintain and improve endurance overall. Some patients report that the hard breathing associated with exercise helps them clear their lungs. Exercise is a recommended part of most treatment plans but you must discuss the extent and type of exercise with your doctor before starting.

 

Stay Informed

Sign Up for NTMir Newsletters!

‘NTMir’, ‘NTM Info & Research’, ‘NTMir Nontuberculous Mycobacteria NTM Info & Research, Inc.’, ‘Rapid Info Pilot Studies’ and ‘RIPS’ are trademarks or common law marks of NTM Info & Research, Inc. Copyright © 2014 NTM Info & Research, Inc. All Rights Reserved.