Diacomit
Diacomit (stiripentol) is an add-on medication for seizures caused by Dravet syndrome, a condition that usually starts before 15 months of age. Children as young as 2 years of age can take this medication, but it has many possible side effects. Diacomit (stiripentol) is currently brand-name only and can be expensive.
What is Diacomit (stiripentol)?
What is Diacomit (stiripentol) used for?
- Seizures associated with Dravet syndrome in people 2 years and older who are also taking clobazam (Onfi)
How Diacomit (stiripentol) works
Diacomit (stiripentol) is an antiepileptic, meaning it treats seizures. The way it works isn't fully known, but it's thought to work by raising the activity of a certain chemical in the brain called gamma-aminobutyric acid (GABA) to help calm and stop signals that can start seizures. It also helps raise the levels of clobazam (Onfi), another seizure medication that you take with Diacomit (stiripentol).
Drug facts
Side effects of Diacomit (stiripentol)
The following side effects may get better over time as your body gets used to the medication. Let your healthcare provider know immediately if you continue to experience these symptoms or if they worsen over time.
Common Side Effects
- Drowsiness (67%)
- Feeling less hungry (46%)
- Weight loss (27%)
- Balance or coordination problems (27%)
- Agitation (feeling annoyed) (27%)
- Weak muscle tone (18%)
- Nausea (15%)
- Tremor (shaking) (15%)
- Slurred speech (12%)
- Trouble sleeping (12%)
Less Common Side Effects
- Vomiting (9%)
- Feeling tired (9%)
- Agression (9%)
- More saliva production (6%)
- Fever (6%)
- Bronchitis (6%)
- Common cold (6%)
- Weight gain (6%)
Diacomit (stiripentol) serious side effects
Contact your healthcare provider immediately if you experience any of the following.
- Suicidal thoughts or actions
- Low white blood cells: repeated fevers and infections
- Low platelets (blood cells that help your body stop bleeding): longer bleeding time from cuts, easy bruising, blood in urine or stool
The following Diacomit (stiripentol) side effects have also been reported
Side effects that you should report to your care team as soon as possible:
- Allergic reactions—skin rash, itching, hives, swelling of the face, lips, tongue, or throat
- Infection—fever, chills, cough, or sore throat
- Thoughts of suicide or self-harm, worsening mood, or feelings of depression
- Unusual bruising or bleeding
Side effects that usually do not require medical attention (report these to your care team if they continue or are bothersome):
- Agitation, feeling irritable or restless
- Drowsiness
- Loss of appetite with weight loss
- Loss of balance or coordination
- Low muscle tone, decrease in reflexes, mobility, or posture
- Nausea
- Tremors or shaking
- Trouble sleeping
- Trouble speaking
Pros and cons of Diacomit (stiripentol)
Pros
- Works well with other medications to control the number of seizures you get if you have Dravet syndrome
- Multiple patient access programs are available from the manufacturer
- Comes in capsules and powder packets for liquid suspension
- Can be given to children 2 years of age and older
Cons
- Can cause drowsiness
- Only available as a brand medication so it might be expensive
- Requires regular blood tests
- Must be taken during a meal
- Might cause withdrawal symptoms if you stop taking it too fast
Pharmacist tips for Diacomit (stiripentol)
- Wash and dry your hands before and after preparing the powder form of Diacomit (stiripentol). To prepare the Diacomit (stiripentol) powder, mix the packet with 100 mL of water. After adding the water to your glass, tap the packet so the medication goes to the bottom of the packet, then cut it open and add all of the powder to the glass. Mix it gently with a spoon until the water is clear before drinking. Look inside the packet to make sure you've used all of the medication. After mixing, drink it right away during a meal. Make sure there is no medication left in the glass after mixing and drinking your dose. You can add an additional small amount of water (25 mL) to the drinking cup and drink all of the mixture to make sure you've taken all of the medication.
- Don't open, break, or chew the capsules since they're meant to be swallowed whole. Take them with a glass of water.
- Diacomit (stiripentol) should be taken with a meal to make sure it works properly. If you take it without food, the acid in your stomach might damage the medication.
- Diacomit (stiripentol) can cause drowsiness. Pay attention to how this medication affects you before driving or performing any activites that require you to be alert.
- If you notice changes in you or your child's mood or behavior with this medication, or are concerned about weight loss, speak to your provider.
- If you think you or your child may have taken too much Diacomit (stiripentol), call a Poison Control Center at 1-800-222-1222 right away. Overdose of this medication might cause breathing problems, which can be dangerous.
Common questions about Diacomit (stiripentol)
It's not recommended to drink alcohol while taking Diacomit (stiripentol). Diacomit (stiripentol) can cause sleepiness, dizziness, and slow your thinking. Drinking alcohol can worsen these side effects and can lead to serious injury.
There isn't enough information available to know if Diacomit (stiripentol) is safe to take during pregnancy. In animal studies, Diacomit (stiripentol) caused harm to pregnant mothers and their unborn babies. There is a pregnancy registry to monitor the safety of Diacomit (stiripentol) during pregnancy. If you're currently pregnant and taking this medication, it's encouraged that you enroll in the North American Antiepileptic Drug (NAAED) Pregnancy Registry by calling 1-888-233-2334.
Yes. If you stop taking Diacomit (stiripentol) too quickly, you might experience more frequent seizures or longer seizures (status epilepticus). Work with your provider to lower your dose slowly when stopping Diacomit (stiripentol) to avoid withdrawal symptoms.
Sleepiness is one of the most common side effects of Diacomit (stiripentol). It's important to see how this medication affects you before driving or doing any activities that require you to be alert. If the sleepiness bothers you, speak to your provider about lowering your dose or switching to an alternative treatment.
No, Diacomit (stiripentol) is an add-on medication, meaning it must be taken together with clobazam (Onfi) to treat seizures. There is currently no information showing how well Diacomit (stiripentol) works or how safe the medication is by itself. Diacomit (stiripentol) isn't approved by the FDA to be used alone to treat seizures.
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Risks and warnings for Diacomit (stiripentol)
Diacomit (stiripentol) can cause some serious health issues. This risk may be even higher for certain groups. If this worries you, talk to your doctor or pharmacist about other options.
Worsening of depression and suicidal thoughts
- Risk factors: History of depression
Diacomit (stiripentol) can worsen your depression and cause suicidal thoughts or actions. Tell your child's provider if you notice any unusual changes in your child's mood or behavior.
Sleepiness
- Risk factors: Alcohol use | Taking other medications that make you less alert
Diacomit (stiripentol) can cause sleepiness, which can lower your ability to focus, think, and react. Be careful and avoid activities that require you to be alert, such as driving a car or operating machinery, until you know how this medication affects you. Drinking alcohol or taking medications that cause drowsiness (e.g., opioids, benzodiazepines) can raise your risk of serious injury. If this side effect bothers you, talk with your provider about lowering your dose or alternative treatment options.
Blood problems
Diacomit (stiripentol) can cause low levels of white blood cells and platelets (blood cells that help your body stop bleeding). Your provider will check your blood counts with a blood test before starting Diacomit (stiripentol) and then every 6 months to make sure your levels are normal. If you feel like you're getting sick often, taking longer than normal to recover from an illness, or experience signs of bleeding (e.g., bruising easily, blood in your urine or stool).
Weight loss and appetite changes
Diacomit (stiripentol) can cause you to feel less hungry or nauseous and can cause vomiting, which can lead to weight loss. As a result, the growth of children taking this medication should be closely monitored. Talk to your provider if you have any concerns about your weight loss or your child's weight while taking Diacomit (stiripentol).
Brain damage from phenylalanine
- Risk factors: People with phenylketonuria (PKU)
Diacomit (stiripentol) powder for suspension contains phenylalanine, which can be harmful to people with phenylketonuria (PKU). PKU is a condition that causes high levels of a substance called phenylalanine in the blood. When phenylalanine levels are too high, it can cause seizures, slowed development, and behavior problems. If you or your child has PKU, discuss the risks and benefits of Diacomit (stiripentol) with your provider before starting it.
Withdrawal symptoms
- Risk factors: Stopping Diacomit (stiripentol) too fast
Diacomit (stiripentol) can cause withdrawal symptoms such as more frequent and longer seizures. To lower this risk, make sure to stop Diacomit (stiripentol) slowly. If you need to stop taking this medication, speak to your provider about the safest way to do this.
Diacomit (stiripentol) dosage
Typical dosage for Diacomit (stiripentol)
The typical dose of Diacomit (stiripentol) is a total of 50 mg/kg per day, split in 2 or 3 doses throughout the day during meals. The maximum recommended dose is 3,000 mg per day.
What are alternatives to Diacomit (stiripentol)?
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