Do you have a condition called Myasthenia Gravis (MG)? Then you probably know very well how much trouble this muscle weakness, drooping eyelids, difficulty speaking, and swallowing can be in your life. You have to use many different medications to control this condition. But one thing you can be happy about is that recently, new medications have been introduced to treat this disease. Today, we are going to talk about Zilbrysq, a new injection that can be used at home.
First, let's see what Myasthenia Gravis (MG) is.
Simply put, Myasthenia Gravis (MG) is an autoimmune condition. This means that our own body's defense system, or immune system, mistakenly starts attacking our own healthy cells.
Imagine that our brain sends a message to a muscle to 'contract'. This message travels along a nerve. The place where the nerve and the muscle connect is like a 'junction'. We call this the neuromuscular junction. At this junction, there are special 'receptors' that receive the nerve message. In MG, our immune system attacks these receptors called 'acetylcholine receptors'. Then the message from the brain is not properly received by the muscle. As a result, the muscle gets tired very quickly and becomes weak.
Not everyone with MG experiences the same symptoms. Some people have a sudden onset of symptoms , while others have a gradual increase in symptoms over the course of years. Sometimes there may be periods of remission (when symptoms go away).
| Common Symptoms of Myasthenia Gravis (MG) | |
|---|---|
| Affected body part | Possible symptoms |
| Eye muscles | Double vision, droopy eyelids. |
| Facial and mouth muscles | Slurring of words while speaking, difficulty chewing and swallowing food, changes in voice, and difficulty controlling facial expressions. |
| Neck, arms and legs | Difficulty walking, inability to use hands and fingers normally, difficulty holding head upright. |
| Respiratory system | Some people (about 20%) may experience a sudden, severe, and often life-threatening condition called a ``myasthenic crisis''. This is an emergency that requires immediate medical attention. |
`Myasthenic crisis` is an emergency condition in which the respiratory muscles become weak and you cannot breathe. It can be caused by infection, stress, or certain medications. If this happens, it is essential to go to the nearest hospital's emergency department (ETU) immediately.
How does the drug Zilbrysq work?
The main goal of treating MG is to restore the transmission of nerve messages through the acetylcholine receptor. Medications such as pyridostigmine (Mestinon), steroids such as prednisone, and immunosuppressants are commonly used to do this.
Zilbrysq belongs to a new class of drugs that work in a different way. We call these ``complement inhibitors``.
Remember when I said that our immune system attacks our muscles? There is a thing called the ``complement pathway`` that plays an important role in this attack process. What Zilbrysq does is block the activity of this complement system. Then the immune system reduces the harmful attacks on the receptors. As a result, nerve messages start to go to the muscles properly again, and muscle strength improves again.
Can Zilbrysq be used by everyone with MG?
No, not everyone can. This medicine is only approved for people who have a specific antibody called an ``anti-acetylcholine receptor antibody'' in their blood. Most people with MG (about 80%-90%) have this antibody. But if you don't have this in your blood, this medicine may not be very helpful. Therefore, before you start taking this medicine, your doctor will do a special blood test to check if you have this antibody.
How do you use this medicine?
Zilbrysq is a liquid medication that is injected under the skin every day. It can be injected into the thigh, abdomen, or back of the upper arm.
- Storage: This medicine should be stored in the refrigerator.
- Before use: Remove the vaccine from the refrigerator 30-45 minutes before injecting it and let it come to room temperature. This will reduce discomfort during injection.
- Training: When you first get this medicine, your doctor or nurse will show you how to inject it exactly. It is very important to inject the medicine exactly as instructed to get the right dose. If there is anything you are not sure about, ask your doctor again.
Special things you need to know before starting the medication
This is a very important part, so pay close attention.
This medicine may increase the risk of some serious infections, especially meningococcal infections . Because of this risk, this medicine is only available through a special safety program called the Zilbrysq REMS program. Both you and your doctor must be enrolled in this program.
As part of this program, your doctor will teach you about meningococcal infections, how to prevent them, how to recognize the symptoms, and the importance of seeking medical advice immediately if symptoms occur.
- Vaccinations: To reduce the risk of infection, your doctor will make sure you have received the meningococcal vaccines at least two weeks before starting Zilbrysq. If you need to start the medication urgently and have not been vaccinated, you will need to take antibiotics until the vaccine takes effect.
- Safety Card: You will be given a special 'Patient Safety Card'. You should keep this card with you at all times. It is essential to keep it with you while you are taking the medicine, as well as for two months after stopping the medicine. You can show this card to any other doctor who treats you.
Side effects and how to manage them?
Like any medicine, Zilbrysq can cause some side effects, but most of them can be managed.
| Side effect | How to manage |
|---|---|
| Injection site reactions (redness, itching, swelling) | Do not inject in the same place every day, but change the place. Use alternate sites such as the thigh, stomach, and upper arm. Do not inject into areas that have wounds, bruises, swelling, or scars. |
| Bacterial infections (nose, throat, lungs) | These can be prevented by getting the necessary vaccinations. Wash your hands often. Stay away from people who are sick. |
| Pancreatitis | Your doctor will test your blood before starting the medication. If you experience severe pain in your upper abdomen (which radiates to your back), call your doctor immediately. |
| Risk of sexually transmitted diseases such as gonorrhea | This medicine may slightly increase the risk of sexually transmitted diseases such as gonorrhea. It is important to practice safe sex (e.g., use a condom) and get tested regularly. Talk to your doctor about this. |
How soon can I expect results?
If Zilbrysq is right for you, you may see some improvement in your symptoms within the first week of starting the medication. Most people see the best results within the first month.
Very important: Do not suddenly stop taking this medicine, or any other medicine for MG, without talking to your doctor. Do not do this even if your symptoms improve. This may cause your condition to flare up again.
If you don't see any improvement in your symptoms after taking the medicine for a month or two, talk to your doctor. He or she will talk to you about other treatment options.
Take-Home Message
- Zilbrysq (Zilucoplan) is a new daily subcutaneous injection for eligible patients with Myasthenia Gravis (MG).
- This works by blocking the 'complement system', which is part of the immune system, and reducing damage to the muscles.
- This medicine can only be used by people who have an antibody called 'anti-AChR antibody' in their blood.
- Due to the risk of serious infection, this medication is only available under a special program called the REMS program. It is mandatory to get the meningococcal vaccine before starting the medication.
- Always keep the 'Patient Safety Card' given to you with you.
- Do not stop taking any medication for MG or change the dosage without medical advice.
- Don't be shy about talking to your doctor about any side effects or problems you may experience.
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