What are neurofibromatosis type 1 (NF1) plexiform neurofibromas?
NF1 is a rare genetic disorder caused by a mutation or flaw in a particular gene. Some children with NF1 develop benign (noncancerous) tumors called plexiform neurofibromas, which can grow along nerves.
What doctors help treat NF1 plexiform neurofibromas?
The location and symptoms of your child's plexiform neurofibromas on the body will help determine which doctors are best to see for treatment. Oncologists, or medical doctors who specialize in treating cancerous and noncancerous tumors, can treat plexiform neurofibromas or refer you and your child to other NF1 specialists. These specialists may include geneticists, scientists who specialize in the study of genes and heredity; neurologists, medical doctors who specialize in treating disease of the nervous system; ophthalmologists, medical doctors who treat eyes and vision; orthopedists, medical doctors who treat bone and mobility issues; and others. Work with your child's doctor to determine the right set of specialists for your child's care team.
What is Koselugo?
Koselugo is the first prescription medicine proven to shrink plexiforms in pediatric patients 2 years of age or older with neurofibromatosis type 1 (NF1) who have plexiform neurofibromas that cannot be completely removed by surgery. It is not known if Koselugo is safe and effective in children under 2 years of age. Learn more about taking Koselugo.
Is Koselugo chemotherapy?
Koselugo is not chemotherapy. Koselugo is an oral, targeted treatment option proven to shrink plexiform neurofibromas in children 2 years of age and older with NF1 who have plexiform neurofibromas that cannot be completely removed by surgery.
How long is Koselugo taken?
After prescribing Koselugo, your child’s doctor will monitor their response to treatment and perform periodic testing and will determine the appropriate length of therapy. Treatment duration of Koselugo can be different for every patient, so it’s important to carefully follow the instructions provided by your child’s doctor.
Where can I fill my Koselugo prescription?
It is available only through specialty pharmacies and is not available at your local retail pharmacy. For more specific information about specialty pharmacies and other distribution channels that carry Koselugo and to learn more about insurance coverage and out-of-pocket costs, visit AlexionOneSource.com.
How much does Koselugo cost?
The Alexion OneSource™ program can provide information about financial support and resources that may be available for eligible patients. To learn more, please visit AlexionOneSource.com.
How do I know if my child is eligible to receive Koselugo?
Your child’s doctor will decide if Koselugo is right for your child. Koselugo is a prescription medicine that is used to treat children 2 years of age and older with NF1 who have plexiform neurofibromas that cannot be completely removed by surgery. It is not known if Koselugo is safe and effective in children under 2 years of age. Learn about Koselugo.
How is Koselugo taken?
Koselugo has an easy-to-follow dosing schedule for a consistent, everyday routine. Koselugo is an oral medication taken twice daily, about 12 hours apart. Koselugo capsules must only be swallowed whole with water. Koselugo can be taken on an empty stomach or with food. They must not be chewed, dissolved, or opened. Taking Koselugo in a different way than instructed may affect how it works. Learn more about taking Koselugo.
My child has trouble swallowing Koselugo capsules. Can they still take Koselugo?
Tell your doctor if your child has trouble swallowing capsules. To learn more or to contact your dedicated Case Manager, please visit AlexionOneSource.com, or call 1-888-765-4747, Monday through Friday, 8:30 AM–8 PM ET. To learn how to help your child take capsules more easily, visit our Starting Koselugo page. For a resource to help with swallowing pills, download the Pill Swallowing Guide.
Can I crush Koselugo capsules?
No, Koselugo capsules must be swallowed whole with water. Do not let your child chew, dissolve, or open a capsule. Tell your child’s doctor if your child has trouble swallowing a capsule. To learn more, visit the Starting Koselugo page.
What are the most common side effects of Koselugo?
In clinical trials, most children and teens had manageable side effects that did not require permanently stopping treatment. The most common side effects of Koselugo were 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. Please visit our Safety page to learn more.
How long does Koselugo take to work?
97% (32/33) of children and teens who responded to Koselugo achieved 20% or greater plexiform neurofibromas shrinkage between 3.3 months and 1 year into treatment.* The time to onset of response ranged from 3.3 months to 1.6 years. It’s important to know that results are different for each patient. Your child’s experience may be different. Your child’s doctor will determine if Koselugo is working for your child. Learn the results of pediatric patients taking Koselugo in a clinical study.
*One more patient achieved 20% or greater plexiform neurofibromas shrinkage after about a year and a half.
What if my child misses a dose of Koselugo?
If your child misses a dose, they should take it as soon as you remember. If it is less than 6 hours before the next scheduled dose, give the next dose at the regular time. Do not make up for the missed dose. If your child vomits at any time after taking Koselugo, they should not take an additional dose. The next dose should be taken at the regular time. To learn more about taking Koselugo, visit our Starting Koselugo page.
Can Koselugo be taken with meals?
Your child can take Koselugo with or without food. To learn more about taking Koselugo, visit our Starting Koselugo page.
