While personal health and wellness are important, it’s not always easy to find time to make it a priority. Even during busy days, pausing for just a moment to reflect on how you are feeling can be helpful, especially for those living with a chronic lung condition.
If you have previously been diagnosed with a lung condition – such as bronchiectasis, chronic obstructive pulmonary disease (COPD), or asthma – respiratory symptoms, including a persistent cough, shortness of breath and/or fatigue, may begin to feel routine and expected. However, Dr. Deborah Levine, Professor of Medicine in Pulmonary and Critical Care Medicine and Medical Director of lung transplantation at UT Health San Antonio, explains that these symptoms could point to another underlying lung condition. If you are being treated for a respiratory disease and your symptoms haven’t been resolved, or are worsening, this could be a sign of a chronic and progressive lung infection called Mycobacterium avium complex (MAC) lung disease. MAC lung disease can be a serious condition and occur by itself or along with other chronic lung diseases.
MAC lung disease is the most common form of nontuberculous mycobacterial (NTM) lung disease, a serious condition, that is caused by bacteria that are common in the environment. The bacteria are aerosolized, which means that they exist in water and soil particles that are in the air and breathed in. Although everyone comes into contact with MAC bacteria during their daily lives, most people do not develop MAC lung disease because their lungs are healthy enough to clear the bacteria. However, those with underlying lung conditions like bronchiectasis, COPD, and asthma are at greater risk.
Dr. Levine encourages you to be an advocate for your health asking your doctor whether you should be tested for MAC lung disease, based on your symptoms and/or progression of your respiratory condition. To guide these discussions, Dr. Levine provides tips to help navigate conversations with your doctor throughout the diagnosis and treatment journey.
Talk to Your Doctor About Symptoms that Won’t Go Away
Dr. Levine notes that some people, like those with a history of lung conditions, are at an increased risk for MAC lung disease because the damage from these conditions can make it easier for MAC to infect their lungs. Therefore, it is critical to be open with your doctor about your symptoms, the impact they are having on your life, and your medical history.
If your doctor suspects you may have MAC lung disease, ask if you should be tested or referred to a specialist (such as a pulmonologist or infectious disease specialist) for testing, as not all types of doctors have experience treating this type of infection. Testing for MAC lung disease typically includes a physical exam, a review of your medical history, collecting a sputum (mucus) culture and doing chest imaging (i.e., CT scan).
Maintain an Open Dialogue if Diagnosed
If you or a loved one is diagnosed with MAC lung disease, your doctor will work with you to determine the best care path forward. Treatment will be determined based on your current health status, medical history, and the strain of bacteria you contracted, among other factors.
The treatment of MAC lung disease involves the consideration of both antibiotic regimens as well as lifestyle changes, such as airway clearance techniques, diet changes and ways to reduce your exposure to MAC bacteria. If an antibiotic therapy is recommended, you will likely be prescribed a guideline-recommended multidrug therapy. This means that you will take more than one medication at the same time. These medicines work together to attack the MAC bacteria in different ways.
According to Dr. Levine, ongoing conversations with your doctor should include discussions about symptom changes, to help determine if the treatment is working.
If your doctor determines that you are not responding to the multidrug therapy, meaning you are still testing positive for MAC, the doctor may consider adding ARIKAYCE® (amikacin liposome inhalation suspension) to your current antibiotic regimen.
ARIKAYCE is the first and only FDA-approved treatment designed specifically to treat MAC lung disease as part of a combination antibacterial drug treatment plan in adult patients who did not respond to a previous combination antibacterial drug treatment alone.
This product was approved by FDA using the Limited Population pathway. This means FDA has approved this drug for a limited and specific patient population.
ARIKAYCE is an inhaled antibiotic you take with a nebulizer. It is different from other inhaled antibiotics because the amikacin is contained inside tiny particles called liposomes. When you inhale ARIKAYCE, the liposomes containing the medicine travel into your lungs. Once inside the lungs, they release the medicine to fight the infection.
Speak with your doctor about MAC lung disease and potential treatment options. For more information on ARIKAYCE visit ARIKAYCE.com.
Stay on Top of Your Health
Keep the above in mind as you set aside time each day to check in with your body. Staying in tune with how you’re feeling, especially if diagnosed with a chronic lung condition like MAC lung disease, can help you be an advocate for your health. And don’t forget to talk to your doctor about how you’re feeling so you can work together to identify a care path that is right for you.
ARIKAYCE can cause serious side effects, including:
- allergic inflammation of the lungs. These respiratory problems may be symptoms of allergic inflammation of the lungs and often come with fever, wheezing, coughing, shortness of breath, and fast breathing
- coughing up of blood (hemoptysis). Coughing up blood is a serious and common side effect of ARIKAYCE
- severe breathing problems. Severe breathing problems can be symptoms of bronchospasm. Bronchospasm is a serious and common side effect of ARIKAYCE. Bronchospasm symptoms include shortness of breath, difficult or labored breathing, wheezing, and coughing or chest tightness
- worsening of chronic obstructive pulmonary disease (COPD). This is a serious and common side effect of ARIKAYCE
While using ARIKAYCE, these side effects may become serious enough that treatment in a hospital is needed. Call your healthcare provider or get medical help right away if you have any of these serious side effects while taking ARIKAYCE. Your healthcare provider may ask you to stop using ARIKAYCE for a short period of time or completely stop using ARIKAYCE.
Do not use ARIKAYCE if you are allergic to any aminoglycoside, or any of the ingredients in ARIKAYCE.
Before using ARIKAYCE, tell your healthcare provider about all medical conditions, including if you:
- have asthma, COPD, shortness of breath, or wheezing (bronchospasm)
- have been told you have poor lung function
- have hearing problems, such as ringing in your ears or hearing loss
- have dizziness or a sense of the room spinning
- have kidney problems
- have neuromuscular disease, such as myasthenia gravis
- are pregnant or plan to become pregnant. It is not known if ARIKAYCE can harm your unborn baby. ARIKAYCE is in a class of medicines that may be connected with complete deafness in babies at birth. The deafness affects both ears and cannot be changed
- are breastfeeding or plan to breastfeed. It is not known if the medicine in ARIKAYCE passes into your breast milk and if it can harm your baby. Talk to your healthcare provider about the best way to feed your baby during treatment with ARIKAYCE
Tell your healthcare provider about all the medicines you take, including prescription medicines and over-the-counter medicines, vitamins, and herbal supplements.
ARIKAYCE may cause serious side effects, including:
- hearing loss or ringing in the ears (ototoxicity). Ototoxicity is a serious and common side effect of ARIKAYCE. Tell your healthcare provider right away if you have hearing loss or you hear noises in your ears, such as ringing or hissing. Tell your healthcare provider if you start having problems with balance or dizziness (vertigo)
- worsening kidney problems (nephrotoxicity). ARIKAYCE is in a class of medicines which may cause worsening kidney problems. Your healthcare provider may do a blood test to check how well your kidneys are working during your treatment with ARIKAYCE
- worsening muscle weakness (neuromuscular blockade). ARIKAYCE is in a class of medicines which can cause muscle weakness to get worse in people who already have problems with muscle weakness (myasthenia gravis)
The most common side effects of ARIKAYCE include: changes in voice and hoarseness (dysphonia), sore throat, diarrhea, muscle pain, nausea, tiredness (fatigue), fever, vomiting, headache, decreased weight, increased sputum, rash, chest discomfort, or cough during or after a dose of ARIKAYCE, especially in the first month after starting treatment.
These are not all of the possible side effects of ARIKAYCE. Call your doctor or pharmacist for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
What is ARIKAYCE?
ARIKAYCE is a prescription medicine used to treat adults with refractory (difficult to treat) Mycobacterium avium complex (MAC) lung disease as part of a combination antibacterial drug treatment plan (regimen).
It is not known if ARIKAYCE is safe and effective in children younger than 18 years of age.
This product was approved by FDA using the Limited Population pathway. This means FDA has approved this drug for a limited and specific patient population, and studies on the drug may have only answered focused questions about its safety and effectiveness.
Please see full Prescribing Information at ARIKAYCE.com.
For important questions to ask your doctor about ARIKAYCE, and tips on how to make the most of your next appointment, see here for a discussion guide. You can also find the study results at ARIKAYCE.com.
