It's normal to feel scared and shocked when you learn that your child or a family member has a rare, serious condition like primary hemophagocytic lymphohistiocytosis (HLH). At a time like this, it's important to be fully informed about the treatments your doctor recommends. Today, we're talking about a special vaccine called Emapalumab, which is used to control the symptoms of this condition.
Simply put, what is Emapalumab?
Emapalumab is a special type of drug called a monoclonal antibody . Think of it like a protein specially made in a lab to control the activity of a specific part of our body's immune system.
Now let's see how this helps with HLH. In HLH, our body's immune system becomes overactive and starts attacking healthy cells. Emapalumab works by blocking a chemical signal called interferon-gamma that causes this overactivity, calming the immune system.
The most important thing: This is not a cure for HLH, but it does help control the severe symptoms of the disease and support the body in its recovery.
Things you need to tell your doctor before starting this medication
Before starting this treatment, it is essential to provide the doctor with your or the patient's complete health history. Be sure to mention these points in particular.
- Current infections: If you currently have any infection such as fever, cough, or cold.
- About vaccinations: If you have recently received any vaccine, or are planning to receive one in the future.
- Tuberculosis (TB): You should tell your doctor if you have had tuberculosis before, have had a positive skin test for tuberculosis, or have recently been in close contact with someone who has tuberculosis.
- Allergies: If you have an allergy to this Emapalumab medicine or any other medicine, food, or dye.
- Pregnancy and breastfeeding: If you are pregnant, trying to get pregnant, or breastfeeding.
Based on this information, your doctor will decide whether it is appropriate to give you this medicine and what special precautions you need to follow.
How is this medicine given?
Emapalumab is an injection that is given into a vein (infusion). You cannot use it at home. It is given by a trained healthcare professional in a hospital or clinic. They will monitor you closely during and after your treatment.
This medicine can be prescribed to children of any age, from newborns to children, when necessary. However, special precautions are taken when giving it to children. You can talk to your pediatrician for more details.
What if I miss a dose of medication?
This treatment is given on a scheduled schedule. Therefore, it is very important not to miss your doctor's appointment. If for some reason you are unable to go on the scheduled day, call your doctor or the hospital immediately and let them know.
What if I take too much medicine?
This is given in a hospital setting so the chances of this happening are very low. However, if you think you may have taken too much of the medicine, immediately call the National Poisons Information Centre at the Colombo National Hospital , or go to the nearest Emergency Treatment Unit (ETU) .
Things to consider during treatment
- Tuberculosis (TB) test: Before starting this medication, you will be tested for tuberculosis (TB). If your doctor prescribes medication for tuberculosis, you should start taking the medication before starting Emapalumab and finish it for the full prescribed period.
- Risk of infection: Since this medicine suppresses the immune system, the risk of infection may be slightly increased. Therefore, if you develop symptoms such as fever, chills, sore throat, or cough , do not self-medicate and inform your doctor immediately. Try to stay away from people who are sick.
- Other medications: Tell your doctor about any other medications, vitamins, or herbal remedies you are taking. In particular, you should avoid receiving live virus vaccines while taking this treatment.
What side effects might I experience?
Like all medicines, Emapalumab can cause side effects, although not everybody gets them.
| Side Effects | |
|---|---|
| Serious side effects that you should report to your doctor immediately | |
| Allergic reactions | Skin rash, itching, swelling of the face, lips or tongue. |
| Difficulty breathing | Shortness of breath, increased breathing rate. |
| Heartbeat | Feeling like your heart is beating fast. |
| High blood pressure | Increased blood pressure. |
| Signs of infection | Fever, chills, cough, sore throat, pain when urinating. |
| Side effects that are usually not serious, but should be reported to the doctor if they persist | |
| Digestive system problems | Stomach ache, constipation, diarrhea, vomiting. |
| Other features | Cough, restlessness (especially in children), pain, redness, or swelling at the injection site. |
This list does not include all possible side effects. If you experience anything different, please seek medical advice.
Take-Home Message
- Emapalumab is a special drug that is injected into a vein to control the symptoms of severe HLH.
- Although this does not completely cure the disease, it is very important for controlling symptoms.
- Before starting treatment, tell your doctor all your health information, especially about infections, allergies, and tuberculosis.
- During treatment, be very careful about signs of infection such as fever, cough, and allergic reactions. If you have any problems, inform your doctor immediately.
- Since this medicine is given in a hospital, be sure to go for treatment on the scheduled dates.


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