HOW CAN I LEARN MORE ABOUT TREATMENT WITH KOSELUGO?

The following resources and videos can help provide you and your family with more information about Koselugo and about NF1 plexiform neurofibromas. As you review the materials, write down your questions and share them with your doctor at your child’s next visit.

Caregiver Brochure

Download this brochure to learn more about neurofibromatosis type 1 (NF1) plexiform neurofibromas (PN) and treatment with Koselugo.

Download

Treatment Journey Tracker

Download this booklet to record your child’s treatment, and write down notes about their treatment so you can discuss them with your child’s doctor at their next appointment.

Download

Symptom Guide for Caregivers

Learn about signs of symptomatic plexiform neurofibromas (PN) to look out for in your child, so you can talk to your child’s doctor if you notice anything similar.

Download

Koselugo Information Guide

Download this guide to learn more about NF1 PN and Koselugo; talk to your doctor to see if Koselugo is right for your child.

Download

US/KOS-NF1/0716

VIDEO LIBRARY

Meet Cooper and his family

Cooper is an 8-year-old boy who is living with NF1 plexiform neurofibromas. Listen to his family share their experiences in an early access program and learn how they currently manage his treatment with Koselugo.

WHAT ARE SOME ADVOCACY ORGANIZATIONS FOR PATIENTS WITH NF1 PN?

The following organizations can help you connect with the NF1 community and learn valuable information about the disease

The mission of the Children's Tumor Foundation is to drive research, expand knowledge, and advance care of the NF community.

Visit the Neurofibromatosis Network website to discover news about treatment and their work toward a neurofibromatosis cure. They provide outreach through education and awareness, while offering hope and support to those affected by NF.

The Littlest Tumor Foundation is focused on increasing the understanding of neurofibromatosis (NF), empowering affected families, and advancing research of preventative therapies.

The resources listed above are independent, nonprofit patient service organizations. Their listing in this website does not imply endorsement.

IMPORTANT SAFETY INFORMATION

Before taking Koselugo, tell your healthcare provider about all of your medical conditions, including if you:

  • have heart problems
  • have eye problems
  • have liver problems
  • are pregnant or plan to become pregnant. Koselugo can harm your unborn baby
    • Females who could become pregnant and males with female partners who could become pregnant should use effective birth control (contraception) during treatment with Koselugo and for 1 week after your last dose
    • Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with Koselugo
  • Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with Koselugo
    • Do not breastfeed during treatment with Koselugo and for 1 week after your last dose
    • Talk to your healthcare provider about the best way to feed your baby during this time

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, or herbal supplements. Especially tell your healthcare provider if you are taking aspirin, blood thinners, or other medicines to treat blood clots. Koselugo contains vitamin E, which may increase your risk of bleeding.

Koselugo may cause serious side effects, including:
Heart problems.
Koselugo can lower the amount of blood pumped by your heart, which is common and can also be severe. Your healthcare provider will do tests before and during treatment with Koselugo to check how well your heart is working. Tell your healthcare provider right away if you get any of the following signs or symptoms:

  • persistent coughing or wheezing
  • shortness of breath
  • swelling of your ankles and feet
  • tiredness
  • increased heart rate

Eye problems. Koselugo can cause eye problems that can lead to blindness. Your healthcare provider will check your vision before and during treatment with Koselugo. Tell your healthcare provider right away if you get any of the following signs or symptoms:

  • blurred vision
  • loss of vision
  • dark spots in your vision (floaters)
  • other changes to your vision

Severe diarrhea. Diarrhea is common with Koselugo and can also be severe. Tell your healthcare provider right away the first time that you get diarrhea during treatment with Koselugo. Your healthcare provider may give you medicine to help control your diarrhea and may tell you to drink more fluids.

Skin rash. Skin rashes are common with Koselugo and can also be severe. Tell your healthcare provider if you get any of the following signs or symptoms:

  • rash that covers a large area of your body
  • peeling skin
  • blisters

Muscle problems (rhabdomyolysis). Muscle problems are common with Koselugo and can also be severe. Treatment with Koselugo may increase the level of a muscle enzyme in your blood, which may be a sign of muscle damage. Your healthcare provider should do a blood test to check your muscle enzyme levels before you start taking Koselugo and during treatment. Tell your healthcare provider right away if you get any of the following signs or symptoms:

  • muscle aches or pain
  • muscle spasms and weakness
  • dark, reddish urine

Your healthcare provider may change your dose, temporarily stop, or permanently ask you to stop taking Koselugo if you have any of these side effects.

The most common side effects of Koselugo are:

  • vomiting
  • stomach-area pain
  • nausea
  • dry skin
  • muscle and bone pain
  • feeling of tiredness or lacking energy
  • fever
  • sores in your mouth
  • headache
  • redness around the fingernails
  • itching

These are not all the possible side effects of Koselugo.

  • are pregnant or plan to become pregnant. Koselugo can harm your unborn baby
    • Females who could become pregnant and males with female partners who could become pregnant should use effective birth control (contraception) during treatment with Koselugo and for 1 week after your last dose
    • Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with Koselugo
  • Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with Koselugo
    • Do not breastfeed during treatment with Koselugo and for 1 week after your last dose
    • Talk to your healthcare provider about the best way to feed your baby during this time

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, or herbal supplements. Especially tell your healthcare provider if you are taking aspirin, blood thinners, or other medicines to treat blood clots. Koselugo contains vitamin E, which may increase your risk of bleeding.

Koselugo may cause serious side effects, including:
Heart problems.
Koselugo can lower the amount of blood pumped by your heart, which is common and can also be severe. Your healthcare provider will do tests before and during treatment with Koselugo to check how well your heart is working. Tell your healthcare provider right away if you get any of the following signs or symptoms:

  • persistent coughing or wheezing
  • shortness of breath
  • swelling of your ankles and feet
  • tiredness
  • increased heart rate

Eye problems. Koselugo can cause eye problems that can lead to blindness. Your healthcare provider will check your vision before and during treatment with Koselugo. Tell your healthcare provider right away if you get any of the following signs or symptoms:

  • blurred vision
  • loss of vision
  • dark spots in your vision (floaters)
  • other changes to your vision

Severe diarrhea. Diarrhea is common with Koselugo and can also be severe. Tell your healthcare provider right away the first time that you get diarrhea during treatment with Koselugo. Your healthcare provider may give you medicine to help control your diarrhea and may tell you to drink more fluids.

Skin rash. Skin rashes are common with Koselugo and can also be severe. Tell your healthcare provider if you get any of the following signs or symptoms:

  • rash that covers a large area of your body
  • peeling skin
  • blisters

Muscle problems (rhabdomyolysis). Muscle problems are common with Koselugo and can also be severe. Treatment with Koselugo may increase the level of a muscle enzyme in your blood, which may be a sign of muscle damage. Your healthcare provider should do a blood test to check your muscle enzyme levels before you start taking Koselugo and during treatment. Tell your healthcare provider right away if you get any of the following signs or symptoms:

  • muscle aches or pain
  • muscle spasms and weakness
  • dark, reddish urine

Your healthcare provider may change your dose, temporarily stop, or permanently ask you to stop taking Koselugo if you have any of these side effects.

The most common side effects of Koselugo are:

  • vomiting
  • stomach-area pain
  • nausea
  • dry skin
  • muscle and bone pain
  • feeling of tiredness or lacking energy
  • fever
  • sores in your mouth
  • headache
  • redness around the fingernails
  • itching

These are not all the possible side effects of Koselugo.