Do you or someone in your family have a rare genetic condition called hATTR? Has your doctor prescribed you a vaccine called Inotersen as a treatment for the neurological problems that result from it? So today we will talk clearly about this medicine, how to use it, and the things we need to be careful about. Since this is a bit complicated medicine, it is very important to have a good understanding of it.
What is this medicine called Inotersen?
Simply put, Inotersen is a drug that is used to treat nerve damage in patients with a specific genetic condition called hereditary transthyretin-mediated amyloidosis (hATTR) . It is commonly sold under the brand name Tegsedi.
Now let's see what this condition called hATTR is. This is a rare disease that is passed down from generation to generation through genes. Due to abnormal mutations in a protein called transthyretin, which is produced in our body's liver, this protein accumulates and deposits in various parts of the body, especially in the nervous system. These deposits (amyloid deposits) damage the nerves and can cause numbness in the limbs, pain, weakness, difficulty walking, and can also affect the heart and kidneys.
So what the Inotersen vaccine does is control the production of that abnormal protein and reduce further damage to the nerves. This is not a cure for the disease, but it helps a lot in controlling the progression of the disease, that is, the worsening of the disease.
Remember, this medicine may also be used for other medical conditions as directed by your doctor. So always follow your doctor's instructions.
Things you need to tell your doctor before taking this medicine
Before you start treatment with Inotersen, it is important to tell your doctor about your complete health history. Be sure to tell them about:
- Kidney disease: If you have or have ever had any kidney disease.
- Blood problems: If you have a condition that reduces the number of red cells, white cells, or platelets in your blood. This is very important because this medicine can affect your platelet count.
- Allergies: If you have had an allergic reaction to Inotersen, any other medicine, food, or dyes.
- Pregnancy: If you are pregnant, or are hoping to become pregnant in the near future.
- Lactation: If you are a mother who is breastfeeding your baby.
Based on this information, your doctor will decide whether this medication is right for you and what additional precautions you need to take during treatment.
How should I use the medicine?
This is an injection under the skin. It is usually given once a week.
- Training: Your doctor or a trained nurse will clearly show you how to prepare this vaccine and how to inject yourself at home. Don't worry, it's very easy once you get used to it.
- Follow the instructions: Take the medicine exactly as directed, at the right times, and never take more than the prescribed amount.
- Disposing of needles: Never throw used needles and syringes in the trash. They should be placed in a special sharps container. If you don't have one, you can get one from your doctor or hospital.
- Overdose: If you think you have taken too much medicine, do not panic and immediately call the National Poisons Information Centre at the Colombo National Hospital, or go to the Emergency Treatment Unit (ETU) of the nearest hospital.
- If you miss a dose: If you miss a dose, take it as soon as you remember. But if it is less than two days until your next dose, skip the missed dose. Just take the next dose at the scheduled time. Never take a double dose.
Possible side effects when taking the medicine
Like any medicine, Inotersen can cause some side effects. Some of these can be serious, so it's important to be aware of them.
| Side effect | Features to watch out for |
|---|---|
| If you have these symptoms, go to your doctor or ETU immediately. | |
| Allergic Reactions | Skin rash, itching, swelling of the face, lips or tongue, difficulty breathing. |
| Abnormal bleeding | Black or bloody stools, red or dark brown urine, vomiting a substance that looks like coffee grounds, red spots on the skin, unusual bleeding from the gums, nose, or eyes. |
| Symptoms of a stroke | Vision changes, confusion, difficulty speaking or understanding, severe headache, sudden numbness or weakness in the face, arm or leg, difficulty walking, dizziness. |
| Symptoms of kidney damage | Difficulty urinating or a change in the amount of urine that comes out. |
| Symptoms of liver damage | Dark yellow or brown urine, yellowing of the eyes or skin, feeling lethargic, fever, pain in the upper right side of the stomach, nausea. |
| Tell your doctor if these persist or are bothersome. | |
| Common side effects | Headache, joint pain, muscle pain, nausea, vomiting, fatigue, redness, itching, or pain at the injection site. |
Other things that may interact with this medicine
Other medications you take may interact with Inotersen, affecting its effectiveness or side effects. Therefore, tell your doctor about all the medications you take. Be especially careful with the following medications:
- Blood thinners: Medicines such as warfarin, apixaban, clopidogrel, and aspirin. Taking these with Inotersen may increase the risk of bleeding.
- Painkillers (NSAIDs): Medications like ibuprofen and naproxen. These can also affect the kidneys and increase the risk of bleeding.
- Other medications that can affect the kidneys include: some antibiotics and diuretics (medicines that increase urine output).
- Vitamin A: Your vitamin A levels may decrease while taking this medication. Therefore, it is very important to get enough vitamin A. Talk to your doctor about the foods and vitamins you eat, and take a vitamin A supplement if necessary.
This list may not include all possible interactions. So tell your doctor about all the medications, herbal remedies, vitamins, and supplements you are taking. Be sure to tell your doctor if you smoke, drink alcohol, or use other drugs.
Take-Home Message
- Inotersen is a drug that is used to treat nerve damage caused by a specific genetic condition called hATTR.
- Before starting treatment, tell your doctor about all your medical conditions (especially kidney and blood-related) and allergies.
- Learn how to inject the vaccine correctly. Dispose of used needles and syringes safely.
- Seek immediate medical attention if you experience any serious side effects, such as unusual bleeding, signs of a stroke, or a severe allergic reaction.
- This medicine is for you only. Do not share it with anyone else for any reason.
- Maintain regular contact with your doctor and attend scheduled tests and appointments.
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