Haemophilia
& Treatment
Prophylaxis
What is prophylaxis?
Regular treatment to prevent bleeds is called prophylaxis. Prophylactic treatment for someone with haemophilia (usually three times a week) helps the blood to clot and minimises the likelihood of long-term joint damage.
It is well recognised that people with moderate haemophilia rarely have spontaneous bleeds. The principle behind giving prophylaxis is to effectively convert a patient with severe haemophilia to moderate haemophilia by giving factor on a regular basis.
Prophylaxis is a very important development in the lives of people with haemophilia. If a person has severe haemophilia and experiences frequent bleeds into joints, long-term damage such as arthritis can occur and that joint can become what is known as a target joint.
What are the advantages?
As well as helping the joints, preventative injections can mean that your life is less disrupted by haemophilia, enabling you to study or work with less worry. For instance, it means that you can have a more normally active lifestyle, particularly if you build the treatment regimen around your sporting activities. This helps ensure that you have high enough factor levels to participate in activities that might have been off limits without the clotting factor boost a treatment can give. Although regular exercise is important you should discuss your choice of sport with your haemophilia centre before you start. Prophylactic treatment may also mean fewer visits to a Haemophilia Centre for treatment.
Are there any drawbacks to prophylaxis?
Prophylactic therapy involves the regular administration of clotting factor and therefore requires a regular time
commitment from the person with haemophilia and, if required, their carer(s).
When should you start?
Ideally, for someone with haemophilia preventative treatment should start before a target joint develops, preferably in early childhood. Exactly when you start prophylaxis will depend on your treatment centre, with some centres opting to initiate prophylaxis immediately after a baby's first major bleed and other centres choosing to monitor a bleed history to determine the best time to start.
Different routines
There are generally two different types of prophylactic regime that you can be put on by your haemophilia team. These are called primary prophylaxis and secondary prophylaxis.
In primary prophylactic regimes you start regular infusions of factor VIII treatment, either before any bleeds have occurred or after a single joint bleed.
In secondary prophylactic regimes you can either have continuous prophylaxis as in the case of the primary regimes but started after two joint bleeds, alternatively, regular infusions of treatment can be undertaken periodically for short periods, for example seasonally or before and after an operation.
Sticking with it
When medication has been prescribed, it is important to continue taking it regularly as this will reduce the risk of ‘spontaneous' bleeds. Prophylactic treatment enables patients to get on with their lives more easily.
For those with haemophilia, prophylaxis can prevent bleeds and joint damage, which can be painful and debilitating. By protecting joints the likelihood of requiring orthopaedic surgery later in life can also be reduced.
