Haemophilia - Treating haemophilia

If your child is diagnosed with haemophilia, their recommended treatment plan will depend on how severe their haemophilia is.

There are two main approaches to treatment:

• preventative treatment – where medication is used to prevent episodes of bleeding and subsequent joint and muscle damage
• on-demand treatment – where medication is used in response to an episode of prolonged bleeding

You will usually be treated by a team of healthcare professionals at a specialist haemophilia hospital department.

Preventative treatment

Most cases of haemophilia are severe and require preventative treatment (prophylaxis). This involves regular injections of clotting factor medication.

When your child is young, you will be trained to give them the injections. They will be taught how to inject themselves when they are older. This will avoid the need for regular hospital appointments.

In some cases, injections may be given into a device called an implantable port, which can be surgically placed under the skin. This port is connected to a blood vessel near the heart, meaning you don't need to try to find a vein for every injection.

If you're having preventative treatment, you'll need regular follow-up appointments with your care team so your progress can be monitored.

Preventative treatment is usually continued until you're fully grown. After this point it may be possible to change to on-demand treatment, but you may be advised to switch back to preventative treatment if you experience any episodes of significant bleeding.

Haemophilia A

Preventative treatment for haemophilia A involves regular injections of a medication called octocog alfa. This is an engineered version of clotting factor VIII (8), the clotting factor that people with haemophilia A don't have enough of. Injections every 48 hours are often recommended.

Common side effects of octocog alfa include an itchy skin rash and redness and soreness at the site of the injection.

Haemophilia B

Preventative treatment for people with haemophilia B involves regular injections of a medication called nonacog alfa. This is an engineered version of clotting factor IX (9), which people with haemophilia B don't have enough of. Injections twice a week are often recommended.

Side effects of nonacog alfa are uncommon, but include headaches, altered taste, nausea, and discomfort and swelling at the injection site.

On-demand treatment

In mild or moderate cases, treatment for haemophilia may only be necessary as an immediate response to bleeding.

Haemophilia A

People with haemophilia A can be treated on-demand with injections of octocog alfa or a medication called desmopressin.

Desmopressin is a synthetic hormone. Hormones are powerful chemicals that can have a wide range of effects on the body. Desmopressin works by stimulating the production of clotting factor VIII (8) and is usually given by injection.

Possible side effects of desmopressin include headache, stomach pain and nausea.

Haemophilia B

On-demand treatment for haemophilia usually involves injections of a medication called nonacog alfa.

For more information about these medications, see haemophilia medicines information.

Living with haemophilia

With treatment, most people with haemophilia can live a normal life. However, there are some things you'll need to be careful of.

For example, you should avoid contact sports such as rugby. You also need to be careful taking other medications because some medicines can interfere with your blood's ability to clot. Common examples of these include aspirin and ibuprofen.

The team caring for you will be able to offer further information and advice about living with haemophilia.