Explanation

If you have any other questions, you can ask your doctor, or chat to other people with haemophilia Factor IX (also called other names, including Alphanine, Mononine and REPLENINE-VF) replaces the natural factor IX that your body makes. It is a clotting factor. Clotting factors are given to stop you bleeding too much if you have diseases like haemophilia.

What does Factor IX do?

Factor IX tops up your factor IX levels when your body doesn't make enough of it by itself. This stops you bleeding too much. Factor IX comes from blood that has been donated.

What does it look like?

Factor IX is a white powder that you mix with water that has been specially cleaned to make sure that it is totally pure. This special cleaning is called sterilising. When they have been mixed together, the powder and sterilised water make a clear liquid. The liquid is used for injections.

When do I have to take it and how much do I take?

Your doctor will decide how much factor IX you need to take, and how often and for how long you need to take it. It will depend on your age and how bad your haemophilia is.

How do I take it?

You will be given factor IX as an infusion. This means that you will have an injection in your vein and the factor IX will go into your vein gradually over a period of time. You will most likely be given your injection by your doctor or a nurse, but if the adult looking after you has been taught how to do it then they might give you your injection at home.

But what if I don't feel like taking it?

It's extremely important that you have your factor IX injections, even if you don't feel like it. If you are bleeding a lot, you could lose too much blood and this can be very dangerous. You could even die!

What should I do if I forget to take it?

It's unlikely that your doctor or nurse will forget to give you your injection, but if they do, make sure you tell him or her straight away. If you are having your injection at home and the adult looking after you forgets to give it to you, you should remind them straight away.

Make sure that he or she doesn't give you a double dose to make up for the one you missed - remember the three Ds: DON'T DOUBLE DOSE!

What are the most likely side effects I might get if I take factor IX?

It's unlikely that you will get any side effects after having your factor IX injections. But, if you do get any side effects, they can be serious. You should stop having your factor IX injections and tell your doctor immediately if you get any of these:

A rash or bumps on your skin

Burning or pain where you have the injection

difficulty breathing or wheezing

Swelling of your lips, face, neck or throat

A quick heartbeat

Feeling or being sick

Feeling restless

Tingling sensations

Feeling like you don't want to move around much

Headache

Feeling cold

What other side effects might I get?

You may also notice the following side effects:

High temperature/fever

Unusual bruising

Feeling generally unwell

If you notice these, or any other side effects, tell your doctor or the person who looks after you immediately.

Are there any other side effects you haven't mentioned?

If you have been allergic to other medicines containing factor IX, you may get problems with your kidneys.

It is possible that factor IX can make your blood clot too easily, although this doesn't happen very often at all.

Is it safe for me to be taking factor IX?

It's very important that you tell your doctor about any medical problems you know you have, or have had in the past, including allergies, so he or she knows if it's safe for you to have factor IX.

Before you start having factor IX injections, you should have vaccinations against hepatitis A and B. Make sure that you tell your doctor if you have had these or not.

Is it okay for me to be taking factor IX if I'm already taking other medicines?

So far, doctors and scientists have not found any other medicines that should not be taken while you are having factor IX. But, it's still very important that you tell your doctor about any other medications that you are taking, including herbal medicines and anything you have bought without a prescription.

Is there anything else I need to know about factor IX?

It's very important that you don't inject any other medicines with factor IX. You should not mix factor IX with anything except the water that you get with the powder.

Also, don't use factor IX if the powder won't dissolve easily or if there are any lumps in the liquid.

What if I have any more questions?

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