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at age 3 | living with TSC
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The Caregiver Call Center: a series that helps answer some of your key questions related to EPIDIOLEX
Hear from experts on how to prepare for a doctor's appointment, what it's like getting started on EPIDIOLEX, how Nurse Navigators can help with personalized support after being prescribed EPIDIOLEX, and so much more. Tune in with our experts to get advice on your most top-of-mind topics.
Full playlist
How to prepare for your doctor's appointment
With the right preparation, asking your doctor about EPIDIOLEX can be an effective conversation. Greg is in the office with Dr. Labiner, an epilepsy specialist, to help you plan ahead.
What it's like getting started on EPIDIOLEX
Knowing what to expect before starting EPIDIOLEX can help ensure you get the most from your treatment. Dr. Labiner, an epilepsy specialist, is here to help you understand what to expect, how your doctor works with you to find the right dose, how to use the titration worksheet, when you could start seeing results, and more.
Managing possible side effects with EPIDIOLEX
EPIDIOLEX side effects may appear after starting treatment but can be tackled with different strategies, such as taking doses with food and more. Join Greg and Dr. Labiner as they discuss some of the most common side effects of EPIDIOLEX and how you can work with your doctor to manage them.
The possibilities with EPIDIOLEX
Thinking about trying EPIDIOLEX, but want to hear how it's helped other people first? Good news—Greg's got some real patient stories he wants to share with you.
A caregiver's advice when considering changing treatment
Considering changing your loved one's treatment? Carmen's been there too. And now she's here for you. Find out how she advocated for her son, Corey, and how you can do the same for your loved one.
Frequently asked questions (FAQs)
The basics
EPIDIOLEX is an FDA-approved medicine containing purified cannabidiol made from plants. It is indicated for the treatment of seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC) in patients 1 year of age and older.
You and your healthcare provider will decide if EPIDIOLEX is the right option.
This may depend on diagnosis and your response to current treatment.
Your healthcare provider may order blood tests and consider medicines and supplements you are currently taking, as well as other risk factors. See the Medication Guide for additional details.
EPIDIOLEX is an FDA-approved medicine, which means you can only get it through a doctor's prescription.
Whether you’re new to EPIDIOLEX or already considering it, it helps to go in prepared. The Appointment Preparation Tool walks you through simple questions about seizures, treatment goals, and what to ask your doctor so you can make the most of your time together.
Your doctor will decide if EPIDIOLEX is right for you or your loved one and write a prescription to be filled at a specialty pharmacy that works with your insurance.
Specialty pharmacies offer expertise in the support and fulfillment of prescriptions for rare, complex, and/or chronic diseases and are like any other pharmacy where you fill FDA-approved prescription medicines. The specialty pharmacy will call you to discuss important information about your prescription, so keep an eye out for a call from a 1-800 number or a local number and be sure to check your voicemail.
The medicine is typically shipped directly to your home, and in some cases, you may be able to pick up your prescription from a local pharmacy. Most people receive their first bottle of EPIDIOLEX less than 10 days after their doctor prescribes it.
While studies were not designed to prove how long it takes EPIDIOLEX to work, an exploratory analysis conducted after the studies were complete suggests that some patients with LGS had fewer drop seizures* after using EPIDIOLEX for 8 days, some patients with Dravet syndrome started having fewer convulsive seizures† as early as 10 days after starting EPIDIOLEX, and some patients with TSC had fewer TSC-associated seizures‡ after using EPIDIOLEX for 6 days. But everyone's symptoms can be different, so your experience with EPIDIOLEX may be different, too.
*Drop seizures included tonic, atonic, and tonic-clonic that led, or could have led, to a fall or injury.
†Convulsive seizures included tonic, tonic-clonic, atonic, and clonic.
‡TSC-associated seizures included different types of partial onset (focal) seizures and generalized seizures.
EPIDIOLEX will not make you feel "high," the common effect associated with THC. EPIDIOLEX and THC are entirely different from each other and have different effects on the body.
EPIDIOLEX is an FDA-approved prescription medicine and is therefore legal under federal and state laws.
EPIDIOLEX is recognized by the Transportation Security Administration (TSA) as an FDA-approved cannabis-derived medicine, which means you can legally carry it on airplanes anywhere in the United States. For information about traveling with EPIDIOLEX, including rules and regulations, tips for navigating airport security, and useful contact numbers, download a travel card.
Since each country's laws vary, Jazz Pharmaceuticals is not able to provide guidance regarding travel with EPIDIOLEX to countries outside the United States. For information from the CDC about medication and international travel, click here.
Traveling soon? Order the EPIDIOLEX travel case to keep everything safe and organized wherever you go.
We offer a variety of resources to support patients and their family throughout treatment.
Starting with the JazzCares® Nurse Navigator Program, where you’ll be connected with a dedicated Nurse Navigator who can provide personalized guidance and support from day one. You can also sign up for the Care Kit, which includes helpful resources and support for every step of treatment. Plus, you’ll find plenty of downloadable resources you can browse anytime for additional tips and information.
Dosing and administration
EPIDIOLEX is an oral solution that is taken twice daily. Food may affect EPIDIOLEX levels, so be sure to take EPIDIOLEX consistently with or without food.
EPIDIOLEX has flexible dosing.
When starting EPIDIOLEX, your doctor may begin with a lower dose and slowly increase the amount of medicine to reach the dose he or she believes is right for you.
Once that dose is reached, your doctor will evaluate your response.
If needed, your doctor may adjust your dose based on your response to EPIDIOLEX and whether you are experiencing side effects.
Your doctor may also request blood work to evaluate liver function before you start and during treatment.
You should take EPIDIOLEX exactly as your doctor tells you. Do not stop taking EPIDIOLEX without first talking to your doctor. Stopping a seizure medicine suddenly can cause serious problems.
Be sure to tell your doctor if you are taking any other medicines so he or she can take that into account when creating your EPIDIOLEX dosing schedule.
If necessary, EPIDIOLEX can be administered with certain nasogastric tubes (NG-tube) or gastrostomy tubes (G-tube). There are important considerations that you need to be aware of when administering EPIDIOLEX using feeding tubes. For specific instructions, please see the EPIDIOLEX Prescribing Information and talk to your healthcare provider for more information.
Active ingredients and possible interactions
The active ingredient in EPIDIOLEX is cannabidiol (CBD). Other ingredients that make up EPIDIOLEX include dehydrated alcohol, sesame seed oil, strawberry flavor, and sucralose (an artificial sweetener). Both strawberry flavor and sucralose are compatible with the ketogenic diet.
EPIDIOLEX is made without sugar to be compatible with most epilepsy diets, such as the ketogenic diet. However, always talk to your doctor about your dietary therapy or any changes to dietary therapy before taking EPIDIOLEX.
EPIDIOLEX may interact with some antiseizure medicines or other medicines you are taking. Do not start or stop other medicines without talking to your doctor. Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements, and cannabis-based products.
Dairy products are not used in the manufacturing of EPIDIOLEX.
EPIDIOLEX does not contain gluten (wheat, barley, or rye).
EPIDIOLEX is an oral solution of cannabidiol (100 mg/mL) in sesame seed oil. It is important to note that sesame is a seed, not a nut. A nut allergy does not necessarily mean you are allergic to seeds.
EPIDIOLEX should be avoided in patients with a known or suspected sesame seed allergy. Talk to your doctor if you have any more questions about dietary restrictions that may impact you or your loved one.
Possible side effects
The most common side effects of EPIDIOLEX include increase in liver enzymes, sleepiness, decreased appetite, diarrhea, fever, vomiting, feeling very tired and weak, rash, sleep problems, and infections.
Financial support
When your doctor prescribes EPIDIOLEX, he or she will submit the prescription to the specialty pharmacy that works with your insurance to determine coverage under your specific insurance plan.*
*Jazz Pharmaceuticals cannot guarantee coverage of EPIDIOLEX or payment of insurance claims.
For information on comprehensive support programs to help with access and affordability for eligible patients taking EPIDIOLEX, including the EPIDIOLEX® Copay Savings Program, click here.
Connect with a JazzCares® Nurse Navigator
Your dedicated Nurse Navigator is here to make sure you feel supported, provide information, and answer questions throughout your EPIDIOLEX treatment journey.
Get the EPIDIOLEX Care Kit
Once you're prescribed, sign up for the EPIDIOLEX Care Kit to get resources and support during treatment.