Has your doctor told you or your child about this medicine called Casimersen? Or maybe you have heard this name somewhere, but don't know exactly what it is, what it is for, and how it works? Actually, this is not a medicine that is talked about very often in our country. So it is very normal to have questions about it, to feel a little scared. So don't be afraid. Today, we will talk about this medicine called Casimersen, to find answers to all the questions you have in your mind, simply, in Sinhala that you understand.
Simply put, what is Casimersen?
Casimersen is a specific medicine used to treat a condition called Duchenne muscular dystrophy (DMD) . It is also known by the brand name AMONDYS 45.
Now you may be wondering, what is Duchenne Muscular Dystrophy (DMD)? It is a genetic condition, meaning it is present at birth. It causes the muscles in the body to gradually weaken and atrophy. This condition mostly affects boys.
Think of the muscles in our body as being like a brick wall. Those bricks need a layer of cement to hold them together and keep them strong. Similarly, a special protein called dystrophin is essential to keep the cells in our muscles strong and healthy. In a person with DMD, the body does not produce this dystrophin protein, or it produces very little of it. So, like a wall without cement, the muscles gradually begin to weaken.
This is where a drug called Casimersen comes in. What this drug does is, it goes into the body, acts at the genetic level, and helps increase the production of the missing dystrophin protein. When the amount of dystrophin in the body increases, the rate at which muscles weaken slows down, and their strength can improve to some extent.
The important thing is that this is not a cure for DMD. However, it can help control the damage to the muscles caused by the disease and improve the patient's quality of life.
Things you need to tell your doctor before taking this medicine
As with any medication, it is important to tell your doctor about your complete health history before starting Casimersen treatment. This is because the doctor will use the information you provide to decide whether this medication is right for you and whether it is safe. Be sure to tell them about these things in particular.
- Kidney disease: If you have any kidney disease, be sure to tell your doctor about it. This medicine is eliminated from the body through the kidneys. So, if your kidneys are not functioning properly, you should be especially careful.
- Allergies: Tell us if you have ever had an allergy to Casimersen, any other medicine, food, or certain dyes. It is important to tell us about any allergies, even minor ones that may occur.
- Pregnancy: If you are pregnant or trying to get pregnant, talk to your doctor about it.
- If you are a breastfeeding mother: If you are a breastfeeding mother, be sure to inform your doctor.
Don't hide these things. The success of the treatment and your safety depend on how openly you talk to the doctor.
How is this medicine administered to the body?
Casimersen is not a medicine that is taken as a pill. It is given to the body by injection into a vein . This is also called `Intravenous infusion`.
This is not something you can do at home. This treatment is only given in a hospital or clinic, under the direct supervision of a doctor, nurse, or trained health professional. So there is nothing to worry about. They will make sure that the right dose is given to the body for the right amount of time.
When giving this medicine to children
Since DMD is a disease that is diagnosed in childhood, this treatment is often given to children. So there are a few things to be especially careful about when giving this medicine to a child. So before starting this treatment for your child, ask your doctor all the questions you have about it.
What if I take too much medicine?
Since this is given in a hospital, the chances of this happening are very low. However, let's assume that somehow more of this medicine has entered the body than necessary. If that happens, immediate action must be taken.
In an emergency, immediately call the National Poisons Information Centre at the Colombo National Hospital . Otherwise, take the patient to the nearest hospital Emergency Treatment Unit (ETU) without delay.
Important note: Remember, this medicine is for the patient only. Do not share or give this medicine to anyone else for any reason.
What to do if you miss a dose?
To get the best results from this treatment, it is very important to take your doses on the scheduled dates and at the scheduled times. Your doctor will have given you the dates to come and pick up your medication. Be sure to go on those dates.
If you are unable to attend your scheduled appointment due to an urgent, unavoidable reason, please contact your doctor or the clinic where you are being treated immediately. They will advise you on what to do next. Never make decisions on your own and skip your medication appointments.
Are there any side effects?
Like any medicine, Casimersen can cause some side effects. However, not everyone will experience all of these side effects. Some people may not experience any side effects at all. The important thing is to be aware of what these side effects are and which ones are serious.
To make it easier to understand, let's divide these side effects into two categories.
| Side effect | Description and what to do |
|---|---|
| Serious side effects that should be reported to the doctor immediately | |
| Allergic reactions | These can occur very quickly. If you experience any of these symptoms, such as red skin rashes, itching all over your body, swelling of your face, lips, tongue or throat, or difficulty breathing, seek medical advice immediately . |
| Kidney injury | If you notice any symptoms such as a sudden decrease in the amount of urine you produce, swelling in your ankles, hands, or feet, inform your doctor immediately. Your doctor will often check for this by doing blood and urine tests. |
| Side effects that are usually nothing to worry about, but should be reported to your doctor if they persist | |
| Cough and sore throat | A normal cough or a slight sore throat may occur. |
| Fever | You may feel a slight fever. |
| Headache and joint pain | You may experience a headache or joint pain. |
| Cold-like symptoms | You may experience symptoms of a cold, such as a runny nose and nasal congestion. |
This list may not include all side effects. If you experience any unusual or bothersome symptoms, don't be shy about talking to your doctor about them.
Are there any interactions with other medications?
As far as is currently known, Casimersen has not been reported to cause major interactions with other medications.
However, to be on the safe side, tell your doctor about all the medications you are taking (including prescription medications, vitamins, herbal remedies, Ayurvedic medicines, and supplements). It is also important to tell your doctor if you smoke or drink alcohol.
How to store the medicine?
This is not something you should think about. Because you can't take this medicine home. Since it is only given in a hospital or clinic, they themselves store it safely at the right temperature.
Take-Home Message
- Casimersen is a specific drug that treats a genetic condition called Duchenne Muscular Dystrophy (DMD).
- This works by increasing the production of a protein called dystrophin, which is deficient in the body, and controlling muscle weakness.
- This is given by injection into a vein, and it is only done in a hospital or clinic, under medical supervision.
- Before starting treatment, tell your doctor all your health information (especially kidney disease and allergies).
- If you notice any signs of severe allergy (skin rash, swelling) or effects on the kidneys (decreased urination, swelling), inform your doctor immediately .
- Take your medication on the dates and times prescribed by your doctor. If you have any inconvenience, please inform us in advance.
- Talk openly with your doctor about any questions or fears you have.
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