Starting Fintepla (fenfluramine)Your first 90 days with dravet syndrome: the steps, the dates and who to call

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Fill in with your doctor's office

First dose date

Doctor who prescribed it

Doctor's office phone

Specialty pharmacy name

Specialty pharmacy phone

Call your child's healthcare provider right away about:

Shortness of breath; tiredness or weakness, especially with activity; lightheadedness or fainting; swollen ankles or feet; chest pain; a fast, fluttering or irregular heartbeat; bluish lips or skin; agitation, hallucinations, tight muscles, high temperature or trouble walking; red or painful eyes, blurred vision or halos around lights; new or worse mood changes, aggression or thoughts of self-harm.

Also tell your doctor's office about:

Eating less or losing weight
Sleepiness or low energy that does not get better
Seizures that are more frequent or last longer than usual
Any new medicine, cough medicine or supplement before your child starts it, especially antidepressants, dextromethorphan or St. John's wort
A bottle near its Discard After date, or a missing syringe or adapter
A pregnancy, or plans for one

ONWARD (UCB)1-833-463-7547

Clinical Nurse Educators Monday to Friday, 7:30 AM to 4:30 PM Central; Care Coordinators for enrolled families 7 AM to 7 PM Central at 1-888-964-3649

The drugmaker's support program, for questions about getting the medicine and paying for it. Answer calls from the specialty pharmacy; a missed call can delay your delivery.

Scan for your full plan, with every date added to your phone calendartrialfriend.com/p/fintepla

How you take it

A cherry-flavored liquid given twice a day with the oral syringe from the pharmacy, with or without food. The dose depends on your child's weight.

Before your first dose

Fintepla comes only through a safety program called the Fintepla REMS. You and your child's doctor fill out an enrollment form, and the doctor explains the heart warning signs to watch for.
A heart ultrasound (echocardiogram) before the first dose. Your child will need one every 6 months while taking Fintepla, and once more 3 to 6 months after stopping.
A full medicine check, including cough medicines and supplements. Some medicines, such as stiripentol, change the dose, and some antidepressants are risky with Fintepla.
Your insurance approves the medicine. UCB's ONWARD program calls you to help with coverage and costs, and its nurse educators answer questions at 1-833-463-7547.
A pharmacy that works with the safety program sends the medicine with syringes. Use only those syringes, never a kitchen spoon.

The first 90 days

At the office visitREMS and referral forms
Before day 1Heart ultrasound before the first dose
Week beforeInsurance approval and shipment
Day 1First dose, 0.1mg/kg twice a day
Day 7Possible first increase
Day 14Highest step on the label's table
Day 30 to 90First refill, between 1 and 3 months in, depending on the dose
Day 90Throw away any medicine left 3 months after opening the bottle
About month 6, then every 180 daysHeart ultrasound, then every 6 months
Before 1 yearInsurance renewal

Trial Friend, trialfriend.com. From the Fintepla FDA label dated October 22, 2026 and the drugmaker's program, checked November 10, 2026. Not medical advice: Trial Friend is not a medical provider, and your doctor decides your dose and tests.