Managing Treatment

Talk to your child's doctor

Communication is the key to any good relationship, so talk to your child's gastroenterologist, and help him or her understand how symptoms affect your child's daily life. By being open and honest, you give your child the best chance of benefiting from treatment.

The "doctor-patient disconnect" is real

Even in the best doctor-patient relationships, there can sometimes be communication breakdowns that can have a significant impact on how well your child's condition is understood and the way that it's treated. Today more than ever, it can be hard for patients to connect with their doctors.

To gain insight into the communication challenges these patients face, in-person interviews with 18 gastroenterologists and 40 patients with inflammatory bowel disease were conducted and videotaped. Here's what was revealed:

  • The average visit lasted less than 11 minutes, and during them doctors did twice the talking: 67%
  • 93% of the symptom-related questions asked by doctors focused on the "here and now" vs since the last appointment—which may explain why flares were only discussed 3% of the time
  • The most surprising fact was that in only 1 out of 10 cases, doctors discussed with patients how they deal with the symptoms of their condition

And yet, some of the most important decisions that will be made in your life are made during these appointments.

Suggestions for your next office visit

  • Write it down: Be sure to write down any symptoms your child experiences, the medications he or she takes, any allergies he or she has, and any previous medical procedures or diseases they've suffered from before your visit. Show this list to your child's gastroenterologist
  • Encourage your child to share how he or she feels: Your child should feel comfortable telling his or her gastroenterologist about the symptoms that are the most bothersome to them. Your child should also not hesitate to talk about his or her feelings
  • Share details about your child's symptoms: If your child has pain, he or she should describe how badly it hurts and anything else that doesn’t feel right. Point to the area and show the doctor the exact place of pain. Also, tell your child’s gastroenterologist about any side effects your child may have, such as stomach problems or skin rashes. This will help your doctor develop a treatment plan that is right for your son or daughter
  • Speak up if something doesn't feel right: Tell your gastroenterologist about any side effects your child may have, such as stomach problems or skin rashes. This will help him or her develop a treatment plan that's right for your child

To help you get the most from your appointment, we've created a Appointment Prep Guide. Simply download and print the guide, answer the questions, and bring it to your child's next appointment. Answering these questions will help you discuss your child's symptoms with your doctor. Together, you and your doctor can then decide if treatment with REMICADE® may be right for your child.

Questions for your child's gastroenterologist

Below are some questions you may want to ask your child's gastroenterologist during your next visit:

  • How did my child get pediatric Crohn's disease (PCD)? Is there a cure?
  • How severe is my child's PCD?
  • How will PCD affect my child's body? How will it affect his or her overall health?
  • What exactly is going on with the body during a flare?
  • What kinds of treatments are available that will manage my child's PCD symptoms?
  • What about biologic therapy? Is my child a good candidate?
  • Is there any kind of diet, food, or fitness plan that can help my child manage PCD?

When asking questions, make sure to have your child's gastroenterologist explain anything you may not understand.

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Only your doctor can recommend a course of treatment after checking your health condition. REMICADE® (infliximab) can cause serious side effects such as lowering your ability to fight infections. Some patients, especially those 65 years and older, have had serious infections caused by viruses, fungi or bacteria that have spread throughout the body, including tuberculosis (TB) and histoplasmosis. Some of these infections have been fatal. Your doctor should monitor you closely for signs and symptoms of TB during treatment with REMICADE®.

Unusual cancers have been reported in children and teenage patients taking TNF-blocker medicines. Hepatosplenic T-cell lymphoma, a rare form of fatal lymphoma, has occurred mostly in teenage or young adult males with Crohn’s disease or ulcerative colitis who were taking REMICADE® and azathioprine or 6-mercaptopurine. For children and adults taking TNF blockers, including REMICADE®, the chances of getting lymphoma or other cancers may increase.

You should discuss any concerns about your health and medical care with your doctor.

What should I tell my doctor before I take REMICADE®?

You should let your doctor know if you have or ever had any of the following:

  • Tuberculosis (TB) or have been near someone who has TB. Your doctor will check you for TB with a skin test. If you have latent (inactive) TB, you will begin TB treatment before you start REMICADE®.
  • Lived in a region where certain fungal infections like histoplasmosis or coccidioidomycosis are common.
  • Infections that keep coming back, have diabetes or an immune system problem.
  • Any type of cancer or a risk factor for developing cancer, for example, chronic obstructive pulmonary disease (COPD) or had phototherapy for psoriasis.
  • Heart failure or any heart condition. Many people with heart failure should not take REMICADE®.
  • Hepatitis B virus (HBV) infection or think you may be a carrier of HBV. Your doctor will test you for HBV.
  • Nervous system disorders (like multiple sclerosis or Guillain-Barré syndrome).

Also tell your doctor if you:

  • Use the medicines Kineret (anakinra), Orencia (abatacept) or Actemra (tocilizumab) or other medicines called biologics used to treat the same problems as REMICADE®.
  • Are pregnant, plan to become pregnant, are breast-feeding, or have a baby and were using REMICADE® during your pregnancy. Tell your baby’s doctor about your REMICADE® use before the baby receives any vaccine because of an increased risk of infection for up to 6 months after your last dose of REMICADE® you received during your pregnancy.
  • Recently received or are scheduled to receive a vaccine. Adults and children taking REMICADE® should not receive live vaccines or treatment with a weakened bacteria (such as BCG for bladder cancer) while taking REMICADE®.

What should I watch for and talk to my doctor about before or while taking REMICADE®?

The following serious (sometimes fatal) side effects have been reported in people taking REMICADE®.

You should tell your doctor right away if you have any of the signs listed below:

  • Infections (like TB, blood infections, pneumonia)—fever, tiredness, cough, flu, or warm, red or painful skin or any open sores. REMICADE® can make you more likely to get an infection or make any infection that you have worse.
  • Lymphoma, or any other cancers in adults and children.
  • Skin cancer—any changes in or growths on your skin.
  • Heart failure—new or worsening symptoms, such as shortness of breath, swelling of your ankles or feet, or sudden weight gain.
  • Reactivation of HBV—feeling unwell, poor appetite, tiredness, fever, skin rash and/or joint pain.
  • Liver injury—jaundice (yellow skin and eyes), dark brown urine, right-sided abdominal pain, fever, or severe tiredness.
  • Blood disorders—fever that doesn’t go away, bruising, bleeding or severe paleness.
  • Nervous system disorders—numbness, weakness, tingling, changes in your vision or seizures.
  • Allergic reactions during or after the infusion—hives, difficulty breathing, chest pain, high or low blood pressure, swelling of face and hands, and fever or chills.
  • Lupus-like syndrome—chest discomfort or pain that does not go away, shortness of breath, joint pain, rash on the cheeks or arms that gets worse in the sun. The more common side effects with REMICADE® are respiratory infections (that may include sinus infections and sore throat), headache, rash, coughing and stomach pain.
  • Psoriasis—new or worsening psoriasis such as red scaly patches or raised bumps on the skin that are filled with pus.

Please read the accompanying Medication Guide for REMICADE® and talk with your doctor. You are encouraged to report negative side effects of prescription drugs to the FDA.

Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.