Hear from real patients about getting MAC-negative

Select to hear their experience below.

  • judy's story, real arikayce patient


  • elisse's story, real arikayce patient
  • lynn and dr.lapinel
  • Julie
  • ARIKAYCE Explored
  • In a clinical study, adding ARIKAYCE to a multidrug treatment helped 29% (65/224) of people with difficult-to-treat MAC (Mycobacterium avium complex) 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.

    Judy had chronic pneumonia and a cough for almost 12 years. After a bad coughing fit left her with a broken rib, she decided she needed some answers. Listen as Judy tells her story of being diagnosed with MAC lung disease and how ARIKAYCE became a part of her journey.

    Judy is a paid ARIKAYCE Patient Ambassador.


    C-speeds. C-speeds. Sound speeds. OK, you can come on in.

    Hi, I'm Judy.

    My husband Mike and I live in Florida and Wisconsin.

    We're also very fortunate through marriage to have 10 grandchildren between us.

    My journey to MAC diagnosis was a long journey. I had such a bad cough, that I actually cracked a rib coughing.

    I went to see an infectious disease specialist and a pulmonary physician

    who recommended a variety of tests, which led to the diagnosis of MAC.

    After diagnosis with MAC, I was put on a multidrug regimen and I thought that would be the answer.

    I found out that my multidrug treatment wasn't working when there were multiple reoccurrences.

    To learn that it's not working is incredibly disheartening, and frustrating, and a little scary.

    I found ARIKAYCE when I was trying to find additional tools for myself on a community blog specific to lung disease.

    And it just felt like a possible tool. A hopeful tool. Maybe this would work for me.

    And I took the ARIKAYCE product sheet to an appointment with my infectious disease specialist.

    I think with ARIKAYCE, in combination with the other things

    that a person can do, in working with their physicians, there's an opportunity to get results, positive results.

    The onboarding of ARIKAYCE with an Arikares Coordinator and an Arikares Trainer, was easier than I thought also, especially as it relates to the financial support.

    The actual training of the ARIKAYCE was pretty smooth. Was actually very smooth.

    The side effects that I experienced was a little bit loss of voice, being hoarse.

    I had a tiny bit of nasal drip.

    I had a little bit of ear ringing.

    I knew what to expect.

    I had a very hands-on and collaborative team, an infectious disease specialist, a pulmonary person, pulmonary technicians, to measure the progress.

    They listened to me, I kept good notes, and when they didn't know an answer, they went to seek an answer.

    My advice for someone that has been diagnosed with MAC on the multidrug treatment that perhaps hasn't worked for them, is to explore the opportunity that adding ARIKAYCE might present for them.

    I think that progress with ARIKAYCE is well measured and is successful for me, personally. I feel I have more control and I'm not looking back.

    Testing Mac Negative

    MAC patients share their feelings about their first MAC-negative test after adding ARIKAYCE in combination with their multidrug treatment.

    Portrait of Judy

    Judy is a paid ARIKAYCE Patient Ambassador.

    Name: Judy

    First MAC-negative test: July 8, 2021

    Testing MAC-negative is a huge what if, weight gone. I don’t have to miss out or pack literally & figuratively everything to travel anywhere.

Next: ARIKAYCE support
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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.


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.