If you or a loved one has Amyotrophic Lateral Sclerosis (ALS), we know how challenging it can be. Living with this disease, which gradually weakens the nerve cells that control our muscles, is not easy. So today we are going to talk about a drug that can help control and slow down the worsening of these symptoms. This drug is called Sodium Phenylbutyrate; Taurursodiol.
What really happens with this medicine?
First, let's understand this. This drug is not a complete cure for ALS. But it does something very important. What this drug does is protect the nerve cells that are damaged by the disease. This way, it can slow down the progression of the symptoms. Simply put, this drug helps to provide some relief to the patient and control the course of the disease to some extent.
Doctors may also recommend this for other medical conditions, so if you have any questions about this, it's best to talk to your doctor and resolve those issues.
Things you should tell your doctor before taking medication
Before starting this medication, it is very important to give your doctor a complete description of your health condition. Be sure to tell him/her if you have any of the conditions below.
| Illness or other condition | Why should I inform the doctor ? |
|---|---|
| Liver disease | Because the liver is important for removing medication from the body. |
| Kidney disease | Because the kidneys filter the medicine. |
| Heart disease (Heart failure) | This medicine contains sodium, which can affect the heart. |
| High blood pressure | Because sodium can increase blood pressure. |
| Gallbladder disease | Because some of the ingredients in this medicine can affect the gallbladder. |
| Pancreatic disease | Because it can affect pancreatic function. |
| Intestinal problems | Because side effects such as diarrhea may occur. |
| Allergies to other medicines, foods or things | To avoid causing an allergic reaction. |
| Being pregnant or trying to get pregnant | To be mindful of the possible effects on the fetus. |
| Breastfeeding | Be aware of the possibility of the medicine passing to the baby through breast milk. |
How should I use the medicine?
It is very important to know how to use this medicine correctly.
- How to take: This is an oral medication. Try to take it at the same time every day, exactly as prescribed by your doctor.
- Preparation: Place the powder from a medicine packet in a glass of room temperature water (about 240 ml). Then stir well to dissolve.
- When to drink: Drink this at the start of a meal or with a snack . Do not take on an empty stomach.
- Stopping: Continue taking the medicine as long as your doctor tells you to. Do not stop halfway.
Attention: If you think you have taken too much of this medicine, that is, an overdose, immediately call the National Poisons Information Centre at the Colombo National Hospital or go to the Emergency Treatment Unit (ETU) of the nearest hospital. Treat this as an emergency.
Another thing, this medicine has been prescribed for you only. Never share it with anyone else, even if that person has the same symptoms as you.
What to do if you miss a dose of medicine?
Don't worry. If you miss a dose, take it as soon as you remember. But if it's almost time for your next dose, skip the missed dose and take your next dose at the scheduled time. Never take a double dose to make up for a missed dose.
Other medications that may interact with this medicine
Some other medications you are taking may interact with this medicine. Therefore, it is important to tell your doctor about all the medications you are taking. Especially if you are taking any of the following medications:
- Certain antacids
- Cholestyramine
- Colesevelam
- Colestipol
- Cyclosporine
- Probenecid
This list is not exhaustive. It is important to tell your doctor about all the medications you are taking, including prescription and nonprescription medications, vitamins, herbal remedies, and traditional medicines. It is also important to tell your doctor if you smoke, drink alcohol, or use other drugs.
What are the possible side effects?
Like any medicine, this one can cause some side effects. Some of them are serious, some of them are common.
| Type of side effect | Symptoms |
|---|---|
| Side effects that should be reported to your doctor immediately | |
| Allergic reactions | Skin rash, itching, swelling of the face, lips, tongue or throat, difficulty breathing. |
| Common side effects that should be reported to the doctor if they persist or are bothersome | |
| Diarrhea | Flatulence. |
| Nausea | Feeling like vomiting. |
| Stomach pain | Abdominal pain or discomfort. |
This list does not include all possible side effects. If you experience anything unusual in addition to these, seek medical advice.
How should I store the medicine? How should I remove it?
- Storage: Keep this medicine out of the reach of children and pets . It is best to store it at room temperature (between 20 and 25 degrees Celsius). Do not use expired medicine.
- Disposal: When disposing of expired or no longer needed medications, it is important to do so safely. Check the instructions on the medication package. If it says it is safe to throw in the trash, take the medication out of the container and mix it with something like cat litter, soil, or used coffee grounds. Then, put the mixture in a tightly sealed bag and throw it in the trash. If you are unsure, ask your doctor for advice.
Take-Home Message
- This medication (Sodium Phenylbutyrate; Taurursodiol) does not cure ALS, but it helps slow down the rate at which symptoms worsen.
- Always take your medicine with a meal, as directed by your doctor.
- Inform your doctor about all other medications you are taking and any other medical conditions you have (especially liver, kidney, or heart disease).
- If signs of an allergic reaction (skin rash, swelling) occur, seek medical advice immediately.
- If you overdose, immediately go to the National Poisons Information Center or the nearest hospital Emergency Department (ETU).
- This medicine is for you only. Never share it with others.
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