When your child or a family member is told by the doctor that they have a condition called Spinal Muscular Atrophy (SMA), how heavy and scary it must have been... It's a very sensitive subject. But don't worry. Today, medical science has advanced a lot. There are new treatments that can help fight these conditions and make life easier. One such specific, advanced treatment is Nusinersen. You may have heard of it under the brand name Spinraza. So, today, let's talk simply and politely about this medicine, how it is given, and what you need to know.
Simply put, what is Nusinersen?
Nusinersen is a special drug developed specifically for the treatment of Spinal Muscular Atrophy (SMA). SMA is a genetic disease. In this, the nerve cells (motor neurons) that control our muscles gradually weaken. Then the muscles stop working properly.
This is where Nusinersen comes in. This drug helps our body produce an essential protein called SMN (Survival of Motor Neuron). This protein keeps the nerve cells that control muscles healthy.
The important thing is that Nusinersen is not a cure for SMA. However, it can help control the progression of the disease and improve muscle strength to some extent . This can significantly improve the patient's quality of life.
Things you need to tell your doctor before starting treatment
Before starting Nusinersen treatment, it is important to give your doctor a complete description of your or your child's health condition. Be sure to inform them of the following in particular:
| Health condition or opportunity | Why is it important to the doctor? |
|---|---|
| Kidney disease | Since the kidneys are involved in the process of removing Nusinersen from the body, the doctor should be especially careful if there is any weakness in the kidneys. |
| Blood clotting problems, such as low platelets | This medication can sometimes affect platelet counts, so if you are at risk of bleeding, your doctor should be aware of this in advance. |
| If you are pregnant or trying to get pregnant | There is still limited data on the effects of this medication during pregnancy, so you should discuss the risks and benefits with your doctor before making a decision. |
| If the baby is breastfed | Since it is not clear whether the medication passes to the baby through breast milk, it is very important to discuss this with your doctor. |
How is this medicine administered to the body?
This is not a home remedy. Nusinersen is a vaccine that is given by a specialist in a hospital or clinic.
This is not like a shot you would normally give in the arm or buttock. It is given into the fluid around the spinal cord, in the spinal column. To be precise, this is called an intrathecal injection . This procedure is performed by a team of trained and experienced doctors.
This treatment can be given to SMA patients of any age, from newborns to adults. However, the decision is made by your doctor after carefully examining the patient's condition.
What do you do if you miss a treatment appointment?
This treatment is given on a specific schedule. Therefore , it is very important to go to the hospital on the scheduled date to receive the treatment. If for some emergency reason you are unable to go on the scheduled date, call your doctor or the hospital immediately and inform them. They will advise you on what to do.
Are there any side effects?
As with any medication, some side effects may occur during treatment with Nusinersen. Some of these are minor, while others require special attention.
| Type of side effect | Symptoms |
|---|---|
| Things to report immediately to your doctor or the hospital's Emergency Treatment Unit (ETU) | |
| Bleeding symptoms |
|
| Kidney problems | Difficulty urinating or a change in the amount of urine you pass. |
| Things that are usually not serious, but should be reported to the doctor if they persist | |
| Common side effects |
|
If you experience any unusual symptoms not listed here, talk to your doctor about them. If you suspect a drug poisoning, you can call the National Poisons Information Center at the Colombo National Hospital .
Does it interact with other medications?
There are no reports of other drugs causing serious interactions with Nusinersen. However, to be on the safe side, tell your doctor about all the things you are taking.
- Medicines for other diseases
- Non-prescription drugs
- Vitamins, herbs, or dietary supplements
- Also, inform the doctor about smoking and alcohol use.
Your doctor will monitor your condition regularly throughout your treatment. You will also need to have blood work done at regular intervals to check your kidney function and platelet count. It is very important not to skip these tests.
Take-Home Message
- Nusinersen is a specific treatment that helps control and manage symptoms of Spinal Muscular Atrophy (SMA). It does not cure the disease completely.
- This medication is given in a hospital by a specialist doctor by injection into the fluid surrounding the spinal cord.
- Before starting treatment, tell the doctor about all medical conditions you or your child have (especially kidney and blood clotting problems) and all medications you are taking.
- Seek immediate medical attention if you notice serious side effects, such as signs of bleeding or problems urinating.
- It is very important to receive treatment on time and have the blood tests prescribed by the doctor.
- If you have any further questions about this treatment, please do not hesitate to ask your doctor.
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