Hemophilia: Understanding prophylaxis

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Learn why preventing bleeds is the best way to manage hemophilia.

In hemophilia treatment, you can take factor regularly to prevent bleeds. This type of therapy is called prophylaxis.

When trying to understand how prophylaxis works, remember that old saying you may have heard your parents tell you: “An apple a day keeps the doctor away”.

In hemophilia you could think of it as: “A needle a day keeps the bleeds away”. But it’s a little more complex than that. There are several important points to consider when thinking about prophylaxis.

Factors affecting prophylaxis treatment

Timing

A big difference between on-demand and prophylaxis treatment is the time between your infusion and the bleed. For on-demand, you infuse almost immediately after the bleed; however for prophylaxis, you infuse hours before a potential bleed.

For prophylaxis, timing is also important when considering when to take regular infusions. If we read the saying carefully, it says that we should eat an apple a day; not an apple a night! By taking factor early in the morning, you’ll get the full benefit throughout the day. Taking factor at night will not be as effective, since there’s a pretty slim chance that you’ll have a bleed while you’re sleeping.

Dosage

Usually a dose you receive with prophylaxis will be smaller than a dose that is given on-demand. This is because you need more product to stop the bleeding after the injury has occurred.

Think back to that apple analogy. They never told us how big the apple had to be to keep the doctor away did they? The same is true for hemophilia. We are still trying to find out the perfect dose to give people with hemophilia.

Frequency

The saying says that we should eat an apple once a day, but how often you need to take prophylaxis varies based on your hemophilia, your activity level and the product that you use. Centres around the world are currently studying the optimal dose and frequency of product. One of the goals of hemophilia research is to find out how often we should be treating to avoid bleeds effectively and efficiently.

Taking product on a regular basis ensures that your factor levels will never be too high or too low. Always having an elevated level of factor in your system protects you from spontaneous bleeds.

Prophylaxis vs. on-demand: Prevention is the better option

When taking all these points into account, prevention is always better than treatment. This is particularly true for severe bleeds. For example, even if you don’t like going to the dentist, having a checkup and cleaning once a year is definitely preferable to going once every five years, but needing to have all of your teeth filled for cavities; especially since as your teeth get more cavities over time, you would need more extreme dental work to keep them together. This can be used as an analogy for on-demand therapy in hemophilia; once a joint has had several bleeds it takes a lot more product to stop bleeding in that joint. You are also more likely to bleed into a damaged joint. Learn more about joint bleeds in "Types of bleeds".

Prophylaxis protects your joints

Prophylaxis is like brushing and flossing your teeth each day after you eat to keep your teeth protected. Similarly, taking frequent, small doses of product before a probable event keeps a reasonable amount of factor in your system. This will help save your joints and reduce the amount of product you use in the long run.

Limitations of prophylaxis

Like all treatment strategies, prophylaxis has its limitations. If you have a severe bleed, your comprehensive care team may use a more aggressive form of treatment.

Last updated: March 13th 2019