Do you sometimes feel like you have no energy, and your muscles are very weak? Especially if one or both eyelids droop, your facial expressions change, or you have difficulty speaking or swallowing? These could be symptoms of a condition called Myasthenia Gravis . Although this is a scary condition, there are now very good treatments for it. Today we are talking about one such new, successful treatment.
What exactly is Myasthenia Gravis?
Simply put, this is a condition where your own body's immune system attacks your own muscles. We call this an autoimmune condition.
A muscle receives a signal from our brain at the point where a nerve and a muscle cell meet. This point of contact is called the neuromuscular junction. Here, a neurotransmitter called acetylcholine sends the signal to the muscle, saying, "Okay, now do it."
However, many people with myasthenia gravis develop antibodies that attack the receptors that receive this acetylcholine signal. These antibodies are called anti- acetylcholine receptor (AChR) antibodies . Because of these antibodies, the muscles do not receive the signal from the brain properly. The result is muscle weakness.
| Common symptoms of myasthenia gravis | |
|---|---|
| Drooping eyelids | Uncontrolled drooping of the eyelids of one or both eyes. |
| Facial changes | Changes in appearance when smiling or speaking due to weakness of the muscles in the face, mouth, or jaw. |
| Weakness in limbs | Loss of strength in the arms, legs, and fingers. Difficulty lifting weights and walking. |
| Difficulty swallowing | Difficulty swallowing food or drink, frequent choking. |
| Difficulty speaking | Voice changes and slurring of words when speaking. |
The important thing is that not every patient will experience all of these symptoms. Symptoms may vary depending on the severity of the disease.
How does Ultomiris (Ravulizumab) work?
There is no cure for myasthenia gravis yet. But there are many effective treatments that can help control symptoms and lead a normal life. Ultomiris is one such new treatment.
Ultomiris is a special antibody that blocks a protein in our immune system called C5 . This C5 protein is what helps damage muscle. So when Ultomiris stops it, your immune system stops destroying muscle cells. That means this drug works by going right to the root of the disease.
How is this treatment given?
This medicine is given to you as an IV infusion, similar to saline. This is given to you by a doctor or trained health worker in a hospital or clinic.
Usually, you will be given an initial dose, followed by another dose two weeks later. After that, you will need to continue taking this treatment every eight weeks . However, your doctor will decide how long you will need to take it and what dose (usually based on your body weight) you will need to take it for .
It is very important to take your medicine on time. If you miss a dose, call your doctor in advance .
How do you know if the medicine is working?
You will start to feel your muscles gradually getting stronger. You will be able to do your daily activities with ease. In clinical studies, some improvement in symptoms has been seen in as little as a week.
However, if you don't feel any difference, or if your symptoms seem to be getting worse, be sure to talk to your doctor . He or she may be able to change the dosage , give you an additional medication, or switch you to a different treatment.
What are the possible side effects?
Like any medicine, it can cause minor side effects. The most common side effects are:
- Bloating (diarrhea)
- Nose or throat infections
- Sore throat
- Common cold symptoms
To control your stomach upset, eat light foods like rice, bananas, and bread. Drink plenty of water. Reduce your intake of caffeinated drinks like coffee. If these measures don't help, or if symptoms like a sore throat or runny nose persist, talk to your doctor . He or she will determine the best treatment for you.
What are the special things to know? (REMS Program)
This is very important!
Ultomiris is a medicine that is given under a special risk management program (Risk Evaluation and Mitigation Strategy - REMS). This is because there is a very small but serious risk of developing a bacterial infection called meningococcal, especially meningitis, which affects the brain and spinal cord.
For this reason, your doctor will give you a special patient safety card .
- It clearly states the symptoms of these infections (e.g. sudden fever, headache, stiff neck, nausea, vomiting, and sensitivity to light).
- It is also stated that if such symptoms occur, one should immediately go to the Emergency Treatment Unit (ETU).
- It is essential to keep this card with you at all times — both during treatment and for up to 8 months after treatment has stopped.
Additionally, before starting treatment, your doctor will ask if you have been vaccinated against meningococcal disease. If not, they will advise you to get the vaccine at least two weeks before starting treatment.
Problems with other medications
It is very important to tell your doctor if you are taking any other treatments, especially:
- Treatment that removes plasma from the blood (plasma exchange or plasmapheresis)
- Intravenous immunoglobulin (IVIg) treatment
- Neonatal Fc receptor (FcRn) blocking drugs for myasthenia gravis
Things like these can reduce the effectiveness of Ultomiris. So tell your doctor about all the medications you take, even vitamins.
Take-Home Message
- Ultomiris (Ravulizumab) is a modern, successful treatment for patients with myasthenia gravis (with AChR antibodies).
- This stops the body's immune system from attacking its own muscles.
- This is a treatment given intravenously every eight weeks (after the initial doses).
- Because there is a risk of meningococcal infection when taking this medicine, it is mandatory to get vaccinated and keep your patient safety card with you.
- Talk openly with your doctor about any side effects, worsening symptoms, or use of other medications. Good communication between you and your doctor is crucial to the success of your treatment.
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