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How often do I need treatment for haemophilia A?

How often do I need treatment for haemophilia A?

Most people with severe and many people with moderate haemophilia A choose to have regular treatment to help prevent bleeds. This is called prophylaxis (pronounced prof-ill-ax-iss). Most people with moderate haemophilia A and all people with mild haemophilia A will treat on-demand, that is following a bleed or for surgery.

Factor VIII (the missing clotting factor in haemophilia A) doesn’t last long in the blood stream. So in general, people with haemophilia A on prophylaxis need treatment about 3 times a week, or every other day.25

These days, treatment schedules are worked out individually for you.34 You have a series of blood tests carried out. These look at how your body manages and uses up factor and are called pharmacokinetics.34 They help your haematologist (a specialist doctor in blood disorders, pronounced heem-a-toll-o-jist) to advise on how much factor VIII (8) you need each time you treat yourself and how often you need to do this. They will also take into account your age, weight, history of bleeds and how active you are.34,35

There are now newer treatments available. For haemophilia A, there is now a form of factor VIII (8) that lasts longer in the blood stream.27 This treatment doesn’t suit everyone. You have pharmacokinetic tests carried out on your blood using the new treatment to find out.27 If it is suitable for you, the tests will tell your haematologist how often you need prophylaxis injections. For different people, this can vary from once every 3 days to once every 5 days.27 If you’ve previously needed injections every other day, that means at least a third fewer injections. Over a year, that’s more than 50 injections you don’t need to have.

Although doctors recommend strongly that everyone with severe haemophilia has prophylaxis, some people with haemophilia choose not to. They prefer to treat only if they have a bleed. In that case, how often you have treatment will be impossible to predict. The newer longer lasting factor VIII (8) does tend to get bleeding under control with fewer injections. For some people, a single injection may be enough.27

Just about everyone with severe haemophilia A gives themselves their factor injections once they are old enough. Most people become expert at this and can do it pretty quickly. The time it takes varies depending on how much factor you need, but it should only take around 15 to 20 minutes. People do generally get very used to doing it because they have to do it so often.

Everyone with haemophilia is advised to have some factor and their infusion kit with them at all times, although people with mild haemophilia should only use this in consultation with their haemophilia centre. You never know what’s going to happen and unfortunately even a minor accident can cause bleeding that needs immediate treatment.

How often do I need treatment for haemophilia B?

Most people with severe haemophilia B choose to have regular treatment to help prevent bleeds. This is called prophylaxis (pronounced prof-ill-ax-iss). Most people with moderate haemophilia B and all people with mild haemophilia B will treat on-demand, that is following a bleed or for surgery.

Factor IX (9) – the missing clotting factor in haemophilia B – lasts a little longer in the blood stream than the factor VIII (8) used to treat haemophilia A. So in general, people with severe haemophilia B need treatment about twice a week.25 These days, treatment schedules are worked out individually for you.34 You have a series of blood tests carried out. These look at how your body manages and uses up factor and are called pharmacokinetics.34 They help your haematologist (a specialist doctor in blood disorders, pronounced heem-a-toll-o-jist) to advise on how much factor IX (9) you need each time you treat yourself and how often you need to do this. They will also take into account your age, weight, history of bleeds and how active you are.35

There are now newer treatments available. For haemophilia B, there is now a form of factor IX (9) that lasts longer in the blood stream.28 This treatment doesn’t suit everyone. You have pharmacokinetic tests carried out on your blood using the new treatment to find out.28 If it is suitable for you, the tests will tell your haematologist how often you need prophylaxis injections. For different people, this can vary from once a week to once a fortnight.28 If you’ve previously needed injections twice a week, that means half as many or even a quarter of the number of injections you used to have.

Although doctors recommend strongly that everyone with severe haemophilia has prophylaxis, some people with haemophilia choose not to. They prefer to treat only if they have a bleed. In that case, how often you have treatment will be impossible to predict. The newer longer lasting factor IX does tend to get bleeding under control with fewer injections. In many situations, a single injection may be enough.28,30

Just about everyone with severe haemophilia B gives themselves their factor injections once they are old enough. Most people become expert at this and can do it pretty quickly. The time it takes varies depending on how much factor you need, but it should only take around 15 to 20 minutes. People do generally get very used to doing it because they have to do it so often.

Everyone with haemophilia is advised to have some factor and their infusion kit with them at all times, although people with mild haemophilia should only use this in consultation with their haemophilia centre. You never know what’s going to happen and unfortunately even a minor accident can cause bleeding that needs immediate treatment.