When your doctor prescribes a medicine called Nitisinone for you or your child, it's normal to feel a little scared and nervous. This is because this is not a very commonly used medicine. But don't worry. In this article, we will talk about this medicine in a very simple way that you can understand. Just like a friend would explain it to you.
What is this medicine called Nitisinone?
Simply put, Nitisinone is a drug that slows down the breakdown of the amino acid tyrosine in our body. It is mainly used to treat a very rare, genetic condition called hereditary tyrosinemia type I.
Imagine, a person with this condition cannot properly digest or break down tyrosine. Then it can accumulate in the body and damage organs like the liver and kidneys. The drug Nitisinone stops that harmful accumulation. This drug also comes under the brand name Orfadin.
What should I tell the doctor before using this medicine?
Before your doctor prescribes this medication, it is very important to know your complete health history. Therefore, be sure to inform him/her about the following:
- Tell us if you have an allergic reaction to Nitisinone or any other medicine, food, or dye .
- If you are pregnant, or expecting a baby soon, say so.
- If you are a breastfeeding mother, tell us about it too.
Based on this information, your doctor will decide whether this medication is right for you or whether the dosage needs to be changed.
How exactly do you use this medicine?
To get the most out of a medication, it is essential to use it correctly.
- Take this medicine with a glass of water.
- The most important thing is to take this medicine at least an hour before eating. Do not take it with food. This is because taking it with food can reduce the absorption of the medicine into the body.
- If you are giving it to young children, you can carefully open the capsule, dissolve the medicine powder in a little water, formula, or applesauce, and give it to them with a spoon. However, you should give it to them immediately after dissolving it, and it is not good to store it.
- Take the exact dose as prescribed by your doctor. Do not take more than the prescribed amount for any reason.
- Do not stop taking the medication suddenly without your doctor's advice.
This medicine is for you only. Do not share it with anyone else for any reason.
When given to small children
This medicine is even given to newborns under certain selected circumstances. However, please discuss this with your pediatrician and follow his/her instructions carefully.
What if I take too much medicine?
If you think you have accidentally taken more than the prescribed dose, immediately call the National Poisons Information Centre at the Colombo National Hospital, or go to the Emergency Treatment Unit (ETU) of the nearest hospital.
What do you do if you miss a medication appointment?
Take the missed dose as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and take the next dose at the scheduled time. Never take a double dose to make up for a forgotten dose.
Things to be careful about when using this medicine
There are several important things you need to pay attention to while taking this medication.
1. Regular medical checkups: Go to your doctor's appointments on time. You may need to have important blood work done to see how the medication is working in your body. Don't skip them.
2. Special Diet: This is the most important and mandatory thing. While taking this medicine, you will have to strictly limit the foods containing the amino acids tyrosine and phenylalanine . Your doctor and a nutritionist will give you a clear list of foods you should and should not eat. Strict adherence to this diet is essential for the success of the treatment.
What are the possible side effects of this medicine?
Like any medicine, Nitisinone can cause side effects. Although not everyone gets them, it is important to be aware of them.
| Classification of side effects | |
|---|---|
| Side effects that you should report to your doctor immediately | |
| Allergies | Skin rash, itching, swelling of the face, lips or tongue. |
| Eye problems | Vision changes, eye pain, redness, sensitivity to light. |
| Liver problems | Dark urine, pale stools, pain in the upper right side of the stomach, yellowing of the eyes or skin (like jaundice). |
| Common symptoms | Loss of appetite, nausea, fever, and malaise. |
| Other serious symptoms | Unusual bleeding or bruising, painful lumps on the palms of the hands and soles of the feet. |
| Side effects that are usually not serious, but should be reported to the doctor if they persist | |
| Stomach discomfort | Diarrhea (bloating). |
| Skin and hair changes | Dry skin, hair loss. |
If you notice anything unusual that is not on this list, talk to your doctor about it too.
How do you keep medicine safe?
To maintain the quality of this medicine, it is also very important to store it correctly.
- Be sure to store it in the fridge. It should be kept at a temperature between 2 and 8 degrees Celsius (36 and 46 degrees Fahrenheit).
- Do not store in the freezer for any reason. Do not let the medicine freeze.
- Do not leave it where children can get hold of it.
- Throw away expired medicine.
This information sheet is only a summary. If you have any further questions, please do not hesitate to ask your doctor.
Take-Home Message
- Nitisinone is a special medication given to treat a rare genetic disease called hereditary tyrosinemia type I.
- This medicine should be taken one hour before meals . Do not take it with food.
- Do not stop taking the medication suddenly without medical advice.
- A special diet is mandatory during this treatment. Follow the instructions given by your doctor and nutritionist exactly.
- If you experience any serious side effects such as eye pain, yellowing of the skin, or unusual bleeding , inform your doctor immediately.
- Keep the medicine safely in the refrigerator , out of the reach of children.
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