To treat the bleeding caused by hemophilia, you take injections of the clotting factor that is missing from your blood. This is usually called ‘product’ or ‘factor’. The day-to-day management of your hemophilia is called your treatment plan.
There are two ways you can take factor: when bleeding occurs (on-demand), or regularly to prevent bleeding (prophylaxis).
Treating after an injury has occurred: On-demand
When taking factor after an injury, it takes a little while for the product to move through your blood and throughout your body. After a treatment, your factor levels rise rapidly, and then steadily decrease as time goes on. Make sure you keep extra factor on hand, because you may need another infusion or another dose to completely recover. Recognizing when you need another treatment is a critical step towards taking full control of your condition.
On-demand treatment is best if you have:
- mild hemophilia, or
- moderate hemophilia and do not bleed often.
Regular treatment to prevent bleeds: Prophylaxis
You can take factor on a regular basis to prevent bleeding. This way if you have an unexpected injury, the factor in your body will be ready to help your blood clot right away.
You can also take factor before a strenuous activity or sport. Taking product before an activity (as opposed to after) gives it more time to mix throughout your body. However, product does not last in your body all day. If you take product in the morning, but have an injury at night, your body will have less product left to help your blood clot. Depending on the type of injury, you may need to take a second injection.
Prophylaxis may be a better option if you:
- have a more severe form of hemophilia
- are very active, or
- bleed often.
Determining a treatment plan can be complicated and should be discussed with your CCT. Your doctor will help you to figure out how much factor you need, and how often, to keep you (and your joints!) as healthy as possible.
Compliance and record-keeping
Compliance means following the treatment plan you decide on with your comprehensive care team (CCT). The main goal of taking factor is to minimize the potential setbacks of hemophilia. This way you can live your life the way you want.
However, taking factor properly goes beyond just compliance. As you get older, you may need to adjust the amount of factor that you take. This depends largely on how often you encounter a bleed. Record-keeping is the best way to let your CCT know how well you have been staying on top of your treatment plan. Without good records, it is hard to make changes in your treatment. If we don’t have an accurate picture of your bleeds, we cannot make a decision to help make it work better for you!