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ARIKAYCE EXPLORED

In their own words: A community of support

What is the ARIKAYCE treatment journey like from a patient’s perspective? Judy visits with fellow patients to share their experiences.

Transcript

I’m on this quest for knowledge to get answers for both you and me. Join me as I learn more about MAC lung disease and ARIKAYCE, from a researcher, a doctor, and a patient living with this disease. Let's get moving.

Throughout my MAC treatment journey, I found that it's a rare but wonderful thing to have someone who really gets you, someone who can walk a mile in your shoes, and you in theirs. That someone for me is Elisse.

Hi, this is so great –

Oh my gosh –

(mixed dialogue)

Come in, come in.

Thank you.

So how was your trip?

It was great, thank you again.

Thank you for coming.

Cheers.

I wonder if you could share with me how it felt when you were diagnosed with MAC lung disease.

Oh absolutely. I was shocked. Honestly, it was like a deer in headlights. My primary care doctor took an X-ray of my lungs because she didn't like what she heard. When I saw the X-rays, I could see the damage she pointed out. I already had damage to both my lungs, and there was a great sense of urgency, to get started on treatment right away.

So you were on an initial multidrug treatment for MAC, did that work for you?

It did for a while, I did the treatment and once I was done, the initial multidrug treatment, I was OK for a while.

Could you tell me more about how you heard about ARIKAYCE?

I actually heard about ARIKAYCE from my pulmonologist. I was hopeful that this would help me test MAC-negative, and it did so I was thrilled.

When you were first diagnosed with MAC, what was your experience with your physicians?

Well, my first experience with my infectious disease doctor, uh was not great. I got no information from them, I would ask questions get one-word answers, it wasn’t working, so I called my pulmonologist to ask to find somebody else - which he did, and it was a completely different experience with someone else. I got my questions answered, we had a rapport, I think it's very important to find a doctor that you can work with.

Did anyone give you a bird's eye view of this situation?

I did not have an overview of the whole thing, of where I was going to be going and how long it was going to take to get there. They did tell me that the first time, when I was MAC-positive, my treatment was going to be 12 months. And the second time I was MAC-positive, my treatment was going to be for 18 months, and that was with the ARIKAYCE.

My experience isn't all that dissimilar. It would have been very helpful if someone had just helped me set the expectations. One of the big things that people try to manage is the side effects, how did that work for you?

I actually had hoarseness in my voice a few times and I actually lost my voice twice for a few days each time.

Mine were very similar. I also lost my voice, I kind of expected it. I had gone through the side effects with my doctor, I had a little bit of nasal drip, even like the blogs and the forms I was on, it was helpful in trying to manage all of that. I know that this can be a long journey, what would be your best advice to people with a diagnosis of MAC lung disease?

I would advise them to remember the doctor is there for you and your health, don't be afraid to ask questions.

Meeting up with other people, someone like Elisse, who also has NTM MAC lung disease, and has traveled the same path with me, helps a person not feel alone. You're not alone on this island. Not only with finding ARIKAYCE, but also finding other tools and other support such as good physicians, as a good team that you're working with.

We all know rare diseases can be lonely diseases, but they don't have to be. Here's what I wish someone would have told me: Remember to advocate and ask all your questions, it's a long journey but there’s support to help you persevere.

Yours truly, Judy.

Connect with a MAC specialist

If you think you might have MAC lung disease, or if you’ve already been diagnosed, you may wish to see a doctor in your area who specializes in lung disease. Click the links below to help you find a specialist who can help.

NTMinfo

Visit NTM Info & Research (NTMir) to find a comprehensive list of physicians with experience treating NTM lung disease.

Zocdoc

Zocdoc allows you to find a physician by searching for a specific disease or condition.

American Medical Association

The American Medical Association’s doctor finder allows you to search for a physician by specialty and filter the results by location.

Connect with a community

Click to explore communities for people with NTM lung disease.

NTM Info & Research Support Groups

NTMir has local support groups that hold regular meetings, as well as online forums for NTM patients, loved ones, physicians, and researchers.

Bronch and NTM 360 Social

This online community is for people affected by bronchiectasis and NTM lung disease, including patients, family members, caregivers, and doctors. It is an online home to help share thoughts and ideas, ask questions, and start discussions.

Inspire

Inspire™ is home to online communities for those living with or affected by lung disease where you can find peer-to-peer support.

ARIKAYCE on Facebook

Stay up-to-date on everything ARIKAYCE. Visit our Facebook page and see the latest postings featuring ARIKAYCE information and events.

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IMPORTANT SAFETY INFORMATION 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 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.