standard Embarking on a new adventure: Life with a rare lung disease

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Carolyn Rios and her husband Rick have adventured far and wide together. From their post-college move to the Alaskan wilderness to 20 years of humanitarian work in Russia, this couple of more than 50 years has shared experiences that have far exceeded their imaginations.

Decades of adventure together — including a forced landing in their bush plane when its engine failed over a mountain range — have helped Carolyn and Rick learn to face and effectively manage unexpected challenges. But even as the two have come to expect the unexpected, nothing could have prepared the couple for Carolyn’s diagnosis at age 69 with the rare lung disease idiopathic pulmonary fibrosis, or IPF, in 2015.

“All of my emergency training could not equip me for the day Carolyn was diagnosed,” said Rick. “My initial thought was, ‘What do I do now? Where’s the emergency plan? How do we land this plane?’”

IPF causes permanent scarring of the lungs. It affects up to 132,000 Americans and yields about 50,000 new cases every year. A proper diagnosis for IPF patients often takes years because its symptoms, including breathlessness and a dry persistent cough, are similar to — and easily confused with — other more common and recognizable lung diseases, such as chronic obstructive pulmonary disorder (COPD) or asthma.

After Carolyn’s diagnosis, she experienced a period of deep concern for taking the next best steps — spiritually, emotionally and medically. Praying brought her comfort and clarity. Sharing the news with their two sons, family members and close friends brought support and companionship. The medical information seemed so bleak, yet her energy to pursue the next best steps remained. Thankfully, she and Rick were able to identify a pulmonologist who educated the two on Ofev® (nintedanib), a treatment option that could help slow the progression of the disease.

Armed with information about IPF and potential treatment options, Carolyn and Rick started thinking about IPF as their next adventure and charted their course. Carolyn began taking Ofev®, and Rick became her helper, assisting her to map out her daily regimen, track her medications and doctor appointments and follow a precise exercise and nutrition plan.

Today, Carolyn’s regular checkups have indicated only a slight drop in lung function. She experiences queasiness due to the medication but works with her doctors — her “adventure guides” — to manage this by eating certain foods prior to taking the medication.

“Life leads us on many adventures. Some adventures we plan, others are unexpected, and others challenge us more than we expect! But regardless, every adventure teaches us something if we’re willing to learn,” said Carolyn. “Experiencing IPF is another one of life’s adventures for me and accepting the challenges that come with it brings me to a deeper understanding of the true essence of my life. Each day still has opportunities to love well — with or without IPF.”

Carolyn and Rick are still able to travel together and most recently planned five trips for their 50th wedding anniversary — one trip to celebrate each decade of their adventure-packed marriage. And while their new “adventure” with IPF is ongoing, they are determined to focus instead on their time together and with their sons and grandchildren.

To learn more about Ofev® visit www.Ofev.com.

What is OFEV?

OFEV is a prescription medicine used to treat people with a lung disease called idiopathic pulmonary fibrosis (IPF). It is not known if OFEV is safe and effective in children.

Important Safety Information

What is the most important information I should know about OFEV (nintedanib)?

OFEV can cause harm, birth defects or death to an unborn baby. Women should not become pregnant while taking OFEV. Women who are able to become pregnant should have a pregnancy test before starting treatment and should use birth control during and for at least 3 months after your last dose. If you become pregnant while taking OFEV, tell your doctor right away.

What should I tell my doctor before using OFEV?

Before you take OFEV, tell your doctor if you have:

  • liver problems
  • heart problems
  • a history of blood clots
  • a bleeding problem or a family history of a bleeding problem
  • had recent surgery in your stomach (abdominal) area
  • any other medical conditions.

Tell your doctor if you:

  • are pregnant or plan to become pregnant.
  • are breastfeeding or plan to breastfeed. It is not known if OFEV passes into your breast milk. You should not breastfeed while taking OFEV.
  • are a smoker. You should stop smoking prior to taking OFEV and avoid smoking during treatment.

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements such as St. John’s wort.

What are the possible side effects of OFEV?

OFEV may cause serious side effects.

TELL YOUR DOCTOR RIGHT AWAY if you are experiencing any side effects, including:

  • Liver problems. Unexplained symptoms may include yellowing of your skin or the white part of your eyes (jaundice), dark or brown (tea colored) urine, pain on the upper right side of your stomach area (abdomen), bleeding or bruising more easily than normal, feeling tired, or loss of appetite. Your doctor will do blood tests regularly to check how well your liver is working during your treatment with OFEV.
  • Diarrhea, nausea, and vomiting. Your doctor may recommend that you drink fluids or take medicine to treat these side effects. Tell your doctor if you have these symptoms, if they do not go away, or get worse and if you are taking over-the-counter laxatives, stool softeners, and other medicines or dietary supplements.
  • Heart attack. Symptoms of a heart problem may include chest pain or pressure, pain in your arms, back, neck or jaw, or shortness of breath.
  • Stroke. Symptoms of a stroke may include numbness or weakness on 1 side of your body, trouble talking, headache, or dizziness.
  • Bleeding problems. OFEV may increase your chances of having bleeding problems. Tell your doctor if you have unusual bleeding, bruising, or wounds that do not heal and/or if you are taking a blood thinner, including prescription blood thinners and over-the-counter aspirin.
  • Tear in your stomach or intestinal wall (perforation). OFEV may increase your chances of having a tear in your stomach or intestinal wall. Tell your doctor if you have pain or swelling in your stomach area.

The most common side effects of OFEV are diarrhea, nausea, stomach pain, vomiting, liver problems, decreased appetite, headache, weight loss, and high blood pressure.

These are not all the possible side effects of OFEV. For more information, ask your doctor or pharmacist. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit https://www.fda.gov/Safety/MedWatch/default.htm or call 1-800-FDA-1088.

For full Prescribing Information, including Patient Information, visit OFEV.com or contact Boehringer Ingelheim Pharmaceuticals at 1-800-542-6257

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