Link to ARIKAYCE (amikacin liposome inhalation suspension) Patient Website.

Real patients reflect on what they wish they had known sooner on their MAC journey. See how their insights may help you on yours.

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Sue, a real patient, looks back on what she wishes she had known about MAC

This is Sue's journey. Your experience may be different. Talk to your doctor if you have any questions or experience any side effects.

sue, real patient

Individual results may vary.
Sue was compensated for her time.

sue's perspective on her mac journey

MAC=Mycobacterium avium complex.

sue talking to her husband, darrell

With my husband, Darrell.

Just the other day, Darrell and I were talking about my MAC journey: the time it took to get to this point, and afternoons just like this that I spent watching TV while I nebulized.

And I realized how far I've come from the person who had never, ever heard of MAC in my life.

sue's perspective on educating herself about mac

I had considered myself to be fairly well-read on health issues, but I initially had no idea the treatment for MAC could be as long as it was—or that multidrug treatment alone could fail. A whole year of multidrug treatment alone was not enough for my MAC infection to clear.

Looking back now, the more-informed me knows if your multidrug treatment isn't working after at least 6 months, experts* recommend asking your doctor about adding ARIKAYCE.

ARIKAYCE is used to treat a limited group of adults with difficult-to-treat MAC lung disease in combination with multidrug therapy.

When my doctor prescribed ARIKAYCE, he told me about possible side effects and treatment goals to strive for. I thought I had all the info that I'd need.

sue's perspective of being on mac treatment

I knew I needed to develop a support system from the get-go. Having Darrell as well as the rest of my family and friends as my rock was so helpful. I had really good spells, then some really tough days in a row. When I temporarily lost my voice, I felt isolated, so I watched patient videos. Although I recognized my experience could be totally different than theirs, I figured it would give me some insight into things. But when I watched Elisse’s video and saw that she had temporarily lost her voice too, I felt a little less alone and more hopeful.

art as part of sue's routine

I discovered that I could also motivate myself with little treats, like a book, a special food, or art supplies that I wanted, which helped me get through the tough weeks.

For me, keeping a positive mindset over time was the hardest thing about taking ARIKAYCE. I feel that what helped me in the end was establishing a peaceful and relaxing routine. At 4pm, I would sit down and watch my favorite TV show about the English countryside while nebulizing. And I found it helped make my experience a little more comfortable.

The day I finally got MAC-negative is a memory still bubbly and sweet.

I went online because I saw I had a lab report. I read it and I could not believe it.

sue sharing the news

All I could think was: Wow, thank goodness after all the doctor visits, sputum tests, and hard work I put in! It was pure euphoria for me. Darrell and I even celebrated with a toast. That joy helped carry me through the next year, as I followed my doctor's orders and stayed on ARIKAYCE and multidrug treatment for 1 more year after my first MAC-negative result.

In a clinical study, adding ARIKAYCE to a multidrug treatment helped 29% (65/224) of people with difficult-to-treat MAC lung disease test MAC-negative at 6 months compared to 8.9% (10/112) of people on a multidrug treatment alone. After 6 months, people on ARIKAYCE did not see an improvement in their 6-minute walk test and St George's Respiratory Questionnaire measurements.

The MAC lung disease journey can be challenging, but I learned I was up for the challenge!

-Sue, a real patient

sue, a real patient

*Recommendation from the 2020 NTM Guidelines.

  • regular visits to monitor your condition
    If you're still testing positive for MAC after at least 6 months on multidrug treatment alone,
    make an appointment and ask your doctor if adding ARIKAYCE is right for you
    Why ARIKAYCE?
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    • IMPORTANT SAFETY INFORMATION INCLUDING BOXED WARNING AND INDICATION ARIKAYCE is associated with: risk of increased respiratory adverse reactions including allergic inflammation of lungs, coughing up blood, severe breathing problems and worsening of COPD.

    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), cough during or after a dose of ARIKAYCE, especially in the first month after starting treatment, muscle pain, sore throat, tiredness (fatigue), diarrhea, nausea, headache, fever, decreased weight, vomiting, rash, increased sputum, or chest discomfort.

    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 used in combination with multidrug therapy for adults who still test positive for MAC lung disease after at least 6 months on multidrug treatment alone.

    ARIKAYCE 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.

    ARIKAYCE was studied in adult patients. It is not known if ARIKAYCE is safe and effective in children younger than 18 years of age.