If your child has Duchenne Muscular Dystrophy (DMD), you may have heard of the name Casimersen. Since it is a new drug, you may have a lot of questions about it. What kind of drug is it, how does it work, and what are the precautions to take when giving it to your child? Don't worry, we will talk about all of that simply and clearly today.
What exactly is Casimersen?
Simply put, Casimersen is a drug given to children with Duchenne Muscular Dystrophy (DMD) and a specific gene mutation . It is not a cure for the disease, but it helps control the muscle weakness caused by the disease.
Now let's see how this works. Imagine that the muscles in our body are like a wall made of bricks. Our body has a protein that is like mortar that binds these bricks together and keeps them strong. It is called dystrophin . In children with DMD, the body does not produce this dystrophin protein. As a result, the wall called muscles gradually weakens and begins to collapse.
What the Casimersen vaccine does is help the body make a partially functional Dystrophin protein , even if it can't make the full Dystrophin protein. It's like trying to keep the wall strong by adding something else that can be used instead of the best plaster, even if it's not the best. This can slow down the rate of muscle weakness.
The important thing is that this medicine is not suitable for every child with DMD. It is only suitable for children with a specific genetic mutation. Only your doctor can decide whether this treatment is suitable for your child.
Things to inform the doctor before giving medicine to the child
Before your child starts Casimersen treatment, it is important to tell your doctor the following information. Do not hide these things, as they are very important for your child's safety.
- Kidney disease: If your child has any kidney problems, be sure to tell them about it.
- Allergies: Tell your child if they have had an allergic reaction to Casimersen or any other medicine, food, dyes, or preservatives.
- Pregnancy or trying to get pregnant: If a young girl is receiving this treatment, inform the doctor if she is pregnant or trying to get pregnant.
- Breastfeeding: It should also be mentioned if the person receiving treatment is a breastfeeding mother.
How to give the medicine? And what to be careful about
This medicine is given as an injection into a vein . This is not something you can do at home. It is given by trained medical staff in a hospital or clinic .
What if you miss a dose of medicine?
It is very important to get the vaccine on the scheduled dates for this treatment. Therefore, do not skip the appointment dates given by the doctor. If for some reason you are unable to go on the scheduled date, call your doctor immediately and inform him/her of this and set a date for the next visit.
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 inform the hospital staff, or call the National Poisons Information Centre at the Colombo National Hospital . Or go to the nearest Emergency Treatment Unit (ETU) .
What are the possible side effects of using the medicine?
Like any medicine, Casimersen can cause some side effects. Doctors will monitor your child's condition very carefully throughout the treatment period. However, it is important for you as a parent to be aware of this.
Pay attention to the characteristics in the table below.
| Side effect | Description and what to do |
|---|---|
| 🚨 Serious side effects that should be reported to your doctor immediately | |
| Allergic reactions | If you experience sudden symptoms such as skin rash, itching, swelling of the face, lips, or tongue, it could be a serious allergic reaction. Report it immediately. |
| Kidney injury | If you notice any difficulty urinating or a change in the amount of urine you produce (a significant decrease or no urine at all), tell your doctor immediately. |
| 🙂 If they persist or are bothersome, you should tell your doctor. Common side effects | |
| Cough and sore throat | A common cough or sore throat. |
| Fever | Feeling feverish. |
| Headache | Headache. |
| Joint pain | Body and joint pain. |
Can there be problems with other medications?
According to the information currently available, Casimersen has not been reported to cause any special interactions with other drugs.
But don't assume that's the case. Give your doctor a complete list of all the medications your child is taking (including vitamins, herbal remedies, and supplements) . It's the best way to keep your child safe.
Take-Home Message
- Casimersen is a drug that helps produce a semi-functional form of the Dystrophin protein, which is missing in Duchenne Muscular Dystrophy (DMD).
- This is not a cure for the disease, but it helps control the symptoms.
- This treatment is only suitable for children with a specific genetic mutation, and your doctor will decide.
- This is an injection given intravenously in a hospital. It is not stored or administered at home.
- Before giving the medicine, tell the doctor all your child's health information, such as kidney disease and allergies.
- Seek medical advice immediately if you notice a serious allergic reaction (skin/face swelling) or changes in urination.
- Feel free to talk to your doctor about any questions or concerns you may have.
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