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Talking To Your Doctor About IPF
Getting the Most Out of Your Doctor’s Appointments

Talking To Your Doctor About IPF

Take an active role in managing your IPF

It's important to learn as much as you can about idiopathic pulmonary fibrosis (IPF) so you can take proactive steps to manage your condition. Talking with your healthcare team can make all the difference. Your team can include your doctor, pulmonologist, and nurses who specialize in lung diseases. Tell your team about yourself. Express your resolve and determination to manage your condition.

Tips for productive doctor’s appointments

Doctor's appointment infographic

1. Preparing before your doctor’s appointment

  • Ask a family member or friend to come with you to the appointment
  • Ask your doctor if you can record the appointment, or if a staff member can write down key notes for you

2. Questions to ask your doctor about managing IPF

  • What can I do now to start managing my IPF?
  • Are there treatment options? What are they?
  • How does treatment for IPF fit in with my personal goals?
  • Can you tell me the possible benefits of IPF treatment?
  • Will there be side effects? If so, what can I do to manage them?
  • Is there anything I should consider to help manage my IPF, such as pulmonary rehab?
  • Will I need oxygen therapy?
  • Are there local support groups you can recommend?

3. Following up after the appointment

  • Schedule your next appointment before you leave your doctor’s office
  • Use a journal to track your health between doctor’s visits and to keep you motivated and inspired during your IPF treatment

“You have to be your own health advocate—ask questions about your care, understand what you’re being told, ask about the side effects of medicines being prescribed. Investigate what you are told and possible alternatives in your treatment plan. Be an active participant in your own healthcare!”

Becki 
Esbriet Ambassador

Esbriet Ambassador Becki

With IPF, once damage occurs, it cannot be undone

That’s why it is important to discuss if starting treatment may be right for you

Become an Active Partner in Your Treatment

Getting the Most Out of Your Doctor’s Appointments

Once you have started taking Esbriet, it's important to continue having a good relationship with your doctor and healthcare team. Having clear communication helps you better understand IPF and helps your healthcare team better support you.

Talk to your doctor about:

  • How you are feeling, emotionally and physically
  • Side effects you may be experiencing
  • The medications you are currently taking
  • Any questions you may have

Prepare for your next doctor visit by keeping a journal

  • Keeping daily records of your health can help your doctor see how you’re doing on your IPF treatment goals.
  • Keep a weekly tracker to help you get into the habit of taking Esbriet 3 times each day with meals
  • Jot down your thoughts, notes, and questions for your doctor as you think of them
  • Record the good things happening to you to stay motivated
  • By arriving at your appointments with your journal filled out, you’ll feel more prepared to partner with your doctor and ready to get the most out of your appointment

“When I have questions about side effects, I call my doctor’s office. From the beginning, I got on a first-name basis with the nurse practitioner, and she helped me an awful lot. Communication with your healthcare team is very important, so never hesitate to contact them. I always let them know when I need help dealing with a problem.”

Jim
Esbriet Ambassador

Esbriet Ambassador Jim
NEXT: Glossary

Select Important Safety Information and Indication

About Esbriet

Esbriet® (pirfenidone) is a prescription medicine used to treat people with a lung disease called idiopathic pulmonary fibrosis (IPF).

It is not known if Esbriet is safe and effective in children.

Before you take Esbriet, tell your doctor if you:
  • have other medical conditions (particularly liver or kidney problems).
  • are a smoker.
  • are or plan to become pregnant or breastfeed (Esbriet has not been studied in these patients).
  • are taking any prescription or over-the-counter medicines, vitamins, or herbal supplements.
What are the possible side effects of Esbriet?

Esbriet may cause serious side effects, including:

  • liver problems. Call your doctor if you have symptoms such as yellowing of your skin or eyes, dark or brown urine, pain on the upper right side of your stomach area, bleeding or bruising more easily than normal, or increased fatigue. Your doctor will also do regular blood tests to check your liver.
  • sun sensitivity and rash. When you are outside, use sunscreen (SPF 50) and wear a hat and clothes that cover your skin to avoid getting a sunburn.
  • severe skin reactions. Call your doctor right away if you have a severe skin reaction such as skin blisters, rash, sores in the mouth, hives or any other severe skin symptoms.
  • stomach problems. Esbriet may cause stomach problems such as nausea, vomiting, diarrhea, indigestion, heartburn, and stomach pain.

Your doctor may change your dose or discontinue Esbriet if side effects do not go away.

The most common side effects of Esbriet include upper respiratory tract infections, feeling tired, headache, dizziness, loss of appetite, sinusitis, insomnia, or weight loss.

These are not all the possible side effects of Esbriet.

What should you avoid while taking Esbriet?
  • Direct exposure to sunlight, or light from sunlamps and tanning beds.
  • Other medicines that can make your skin sensitive to sunlight.
  • Smoking, which may affect how well Esbriet works.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch or to Genentech at 1-888-835-2555.

Please see full Prescribing Information, including Patient Information, for additional important safety information.

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    • Genentech’s educators are called Clinical Education Managers. They do not provide medical advice. If you have questions about your health or treatment, you are encouraged to contact your health care provider.

      Genentech’s educators are called Clinical Education Managers. They do not provide medical advice. If you have questions about your health or treatment, you are encouraged to contact your health care provider.

    • Zitter Health Insights. Policy & Access Tracking Tool for Idiopathic Pulmonary Fibrosis. Published September 2017.

      Zitter Health Insights. Policy & Access Tracking Tool for Idiopathic Pulmonary Fibrosis. Published September 2017.

    • Independent co-pay assistance foundations have their own rules for eligibility. We cannot guarantee a foundation will help you. We only can refer you to a foundation that supports your disease state. We do not endorse or show financial preference for any particular foundation. The foundations we refer you to are not the only ones that might be able to help you.

      Independent co-pay assistance foundations have their own rules for eligibility. We cannot guarantee a foundation will help you. We only can refer you to a foundation that supports your disease state. We do not endorse or show financial preference for any particular foundation. The foundations we refer you to are not the only ones that might be able to help you.

    • The Medicare Extra Help program is not a Genentech program. It is administered by the Social Security Administration. The co-pay amount for Medicare Extra Help changes each year.

      The Medicare Extra Help program is not a Genentech program. It is administered by the Social Security Administration. The co-pay amount for Medicare Extra Help changes each year.

    • This Esbriet $5 Co-pay Program is valid ONLY for patients with commercial insurance who have a valid prescription for a Food and Drug Administration (FDA)-approved indication of a Genentech medication. Patients using Medicare, Medicaid or any other federal or state government program to pay for their medications are not eligible.

      Under the program, the patient will pay a co-pay. After reaching the maximum program benefit, the patient will be responsible for all out-of-pocket expenses.

      All participants are responsible for reporting the receipt of all program benefits as required by any insurer or by law. No party may seek reimbursement for all or any part of the benefit received through this Program. The program is only valid in the United States and U.S. Territories. This program is void where prohibited by law and shall follow state restrictions in relation to AB-rated generic equivalents (e.g., MA, CA) where applicable. The patient, guardian, prescriber, hospital and any other person using the program agree not to seek reimbursement for all or any part of the benefit received by the patient through the offer of this program. Genentech reserves the right to rescind, revoke or amend the program without notice at any time. Additional terms and conditions apply. Please visit EsbrietCopay.com for the full list of Terms and Conditions.

      This Esbriet $5 Co-pay Program is valid ONLY for patients with commercial insurance who have a valid prescription for a Food and Drug Administration (FDA)-approved indication of a Genentech medication. Patients using Medicare, Medicaid or any other federal or state government program to pay for their medications are not eligible.

      Under the program, the patient will pay a co-pay. After reaching the maximum program benefit, the patient will be responsible for all out-of-pocket expenses.

      All participants are responsible for reporting the receipt of all program benefits as required by any insurer or by law. No party may seek reimbursement for all or any part of the benefit received through this Program. The program is only valid in the United States and U.S. Territories. This program is void where prohibited by law and shall follow state restrictions in relation to AB-rated generic equivalents (e.g., MA, CA) where applicable. The patient, guardian, prescriber, hospital and any other person using the program agree not to seek reimbursement for all or any part of the benefit received by the patient through the offer of this program. Genentech reserves the right to rescind, revoke or amend the program without notice at any time. Additional terms and conditions apply. Please visit EsbrietCopay.com for the full list of Terms and Conditions.

    • To be eligible for free Genentech medicine from the Genentech Patient Foundation, insured patients who have coverage for their medicine must have exhausted all other forms of patient assistance (including the Esbriet $5 Co-pay Program and support from independent co-pay assistance foundations) and must meet certain financial criteria. Uninsured patients and insured patients without coverage for their medicine must meet different financial criteria.

      To be eligible for free Genentech medicine from the Genentech Patient Foundation, insured patients who have coverage for their medicine must have exhausted all other forms of patient assistance (including the Esbriet $5 Co-pay Program and support from independent co-pay assistance foundations) and must meet certain financial criteria. Uninsured patients and insured patients without coverage for their medicine must meet different financial criteria.

    • Eligible patients will pay as little as $5 per valid prescription, subject to a maximum benefit of $25,000 for a 12-month period.

      Eligible patients will pay as little as $5 per valid prescription, subject to a maximum benefit of $25,000 for a 12-month period.