Living with a chronic lung condition can be challenging. The first step toward improving your lung health is understanding what kind of lung condition you have and what you can do to manage your condition in close partnership with your doctor.
One such condition, Mycobacterium avium complex (MAC) lung disease, can be serious and can worsen over time. Commonly found in the environment, MAC bacteria is the most common species that causes nontuberculous mycobacterial (NTM) lung disease. MAC bacteria can get inside your lungs when you breathe them in through daily activities, such as showering or gardening. While most people who come in contact with MAC do not develop an infection, people at risk are those with other lung conditions such as bronchiectasis, chronic obstructive pulmonary disease (COPD) and asthma.
MAC lung disease symptoms – persistent cough, shortness of breath and fatigue – are similar to those of other lung conditions. Thus, it may take years to identify and properly diagnose. Early identification is important because MAC lung disease can progress and could potentially result in lung damage.
If your doctor suspects you have MAC lung disease, you may be referred to a specialist – such as a pulmonologist or infectious disease specialist – who has experience diagnosing and treating the condition. A series of tests can help ensure a proper diagnosis, and these include obtaining sputum, or mucus samples, and a chest CT scan. If diagnosed, you and your doctor will work together to determine the right treatment plan for you.
Dr. Nicole Lapinel, pulmonologist and assistant clinical professor at Louisiana State University School of Medicine, says that active monitoring and being open with your healthcare team about how you’re feeling are an integral part of MAC lung disease management.
According to Dr. Lapinel, “While the 2020 NTM Lung Disease Treatment Guidelines are at the forefront of doctors’ decision-making process, it’s essential for patients to have a personalized treatment plan that includes support from other specialists. The first steps are to work together to determine the appropriate combination of airway clearance techniques, antibiotics if recommended and lifestyle changes to manage the condition.”
After establishing an initial treatment plan, it’s important to continue monitoring progress to assess whether the condition is improving, staying the same or worsening. According to the 2020 NTM Treatment Guidelines, treatment is considered successful if a patient’s sputum culture shows there is no sign of MAC, meaning they test negative for the bacteria. However, the Guidelines also suggest that if the multi-drug antibiotic treatment regimen is not successful after six months, other options may be considered. This makes it important to maintain regular communication with your care team and share how you’re feeling with your doctor.
When starting new medications, Dr. Lapinel suggests keeping a journal to document symptoms and any side effects. She also encourages patients to speak with their doctors about how frequently they should be seen in the clinic; typically, once every 1-3 months depending on the circumstances.
Continuing to Advocate While on Treatment
Because managing MAC lung disease can feel overwhelming, Dr. Lapinel recommends being proactive by staying in close communication with your care team about your symptoms and overall health, even while on treatment.
For MAC lung disease patients, putting this into practice is key. Kathy, a MAC lung disease patient, has learned the importance of two-way dialogue with her doctor since being diagnosed in 2015 after experiencing symptoms for five years.
Kathy and her pulmonologist worked together to determine the right treatment for her, which included multiple antibiotics. Just as Dr. Lapinel recommends, Kathy scheduled routine check-ups with her own pulmonologist every few months to monitor her condition. Her pulmonologist ordered annual chest x-rays and chest CT scans in order to monitor her condition and to determine if she was making appropriate progress on treatment.
After over six months of being on treatment, Kathy’s sputum cultures were still testing positive for MAC lung disease. That’s when her pulmonologist decided to refer her to an infectious disease specialist, who suggested adding prescription ARIKAYCE® (amikacin liposome inhalation suspension) to her treatment regimen. Kathy took ARIKAYCE as prescribed, to help with proper management of the condition.
ARIKAYCE is the first and only FDA-approved treatment designed specifically to treat refractory MAC lung disease as part of a combination treatment plan in adult patients who did not respond to combination treatment alone.
This product was approved by the FDA using the Limited Population pathway. This means the 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.
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.
As patients consider their own treatment journeys with their doctors, Dr. Lapinel offers the following tips to help patients manage this condition.
1. Maintain Open Communication with Your Healthcare Team
Arrange regular check-ins with your doctors to monitor your progress and determine if your treatment is working. Today, healthcare services can be conducted virtually through the internet and telephone, but certain appointments may still need to occur in person. You should talk to your doctors to determine your options.
2. Stay on Top of Your Overall Health
It is important to take care of your overall health – mentally, emotionally and physically. Your doctor can share lifestyle changes such as a well-balanced diet, ways to help reduce exposure to MAC bacteria and airway clearance techniques. Beyond your care team, you may benefit from a support system to help manage your condition. This may include family members, friends or loved ones that may help with emotional support and activities such as transportation to and from appointments.
3. Know Your Treatment Options
If you continue to test positive for MAC lung disease after months of treatment, consider speaking with your doctor about alternate treatment options that may be appropriate. The 2020 NTM Treatment Guidelines recommend adding ARIKAYCE for MAC lung disease patients who continue to test positive after at least six months of a standard multidrug treatment regimen. Learn more about the guidelines and speak to your doctor to find out if these could impact your treatment plan.
If you have been prescribed ARIKAYCE, you can consider enrolling in the Arikares Patient Support Program. This program is designed to help you get started on treatment and become familiar with taking it. Additionally, the Arikares Patient Support Program provides information about insurance coverage and financial support options for eligible patients.
Knowing the Possible Side Effects
Everyone responds differently to treatment, so if you think you may be experiencing any potential side effects while taking ARIKAYCE, be sure to alert your doctor immediately.
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
- serious allergic reactions. Serious allergic reactions that may lead to death have happened to people who take ARIKAYCE. Stop taking ARIKAYCE right away and get emergency medical help if you have any of the following symptoms of a serious allergic reaction: hives, itching, redness or blushing of the skin (flushing), swollen lips, tongue or throat, trouble breathing or wheezing, shortness of breath, noisy high-pitched breathing (stridor), cough, nausea, vomiting, diarrhea, feel cramps in your stomach area, fast heart rate, feeling light headed, feeling faint, loss of control of the bowels or bladder (incontinence), and dizziness
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.
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.
Sponsored by Insmed Incorporated.