When you or your child lives with hemophilia or related bleeding disorders, your specialty care will likely involve intravenous infusions of medication (infusions directly into the vein). There are different types of infusions that may be used to help prevent or treat symptoms of hemophilia in different situations.

If you or your child hasn’t had an infusion before, it’s important to understand how they’re done and what type of infusion is needed. It’s also important to gain skills and learn tips to make the infusion process go as smoothly as possible. Keep reading to find out what you need to know about infusions for hemophilia.

What Is an Infusion for Hemophilia?

An infusion is a way to administer medications, such as replacement clotting factor, directly into your bloodstream. They get injected into a vein to begin working in your bloodstream. Note that infusions are different from injections given under the skin, which don’t go directly into a vein.

Home Infusions

Some people learn to do infusions at home so they don’t have to go see a healthcare provider whenever they need one. This can help prevent more bleeding episodes and provide faster hemophilia treatment for bleeds that do happen. If home infusions aren’t right for you, you can also get them at a hemophilia treatment center.

Most of the time, you’ll be infusing clotting factor replacement therapy to help your blood or your child’s blood clot better. There are different versions of clotting factor depending on what type of bleeding disorder you have. The two most common types replace factor IX (9) to treat hemophilia B and factor VIII (8) to treat hemophilia A. Some factor is made from human plasma, while some is recombinant — produced to be similar to natural human factor. Both can be effective ways to combat hemophilia by replacing the missing clotting factor.

Certain types of factor decay faster in your body than other types. Your hematologist will tell you which types will work for you.

Inhibitors

Some people living with hemophilia develop inhibitors. These prevent infused factor from working or affect how well it works. If you or your child develops these, you’ll also need to inject a bypassing agent to help the factor work better.

Types of Infusions for Hemophilia

There are several types of infusions for adults and children with hemophilia. You or your child may need some or all of these or may use different types of infusions or dosing at different times. Note that factor products can be used either to prevent bleeds or control an active bleed.

Prophylactic Infusions

An infusion is prophylactic when you inject it to prevent a bleed from occurring. You may do this to lower the risk of bleeding as much as possible. Prophylactic treatment, or prophylaxis, also helps prevent damage to muscles and joints from frequent bleeds.

Most of the time, you’ll be injecting factor. The frequency of factor infusion depends on the half-life of the infusion being used. Standard half-life products may need to be infused two or three times a week, while extended half-life products require less frequent infusion. Your doctor may also have you infuse other medications prophylactically. These include medications that help your body make more factor and a medication that helps blood clots last longer.

Episodic Infusion

An infusion is episodic when you inject it because you’re currently experiencing a bleed and you need to make it stop. This is almost always a factor infusion, and it often occurs after an injury, so it is also known as on-demand therapy. Episodic injections are more common in children who are very young and people with severe hemophilia. Many people with hemophilia carry an emergency kit with infusion supplies in case they need an episodic infusion for the treatment of bleeding.

Gene Therapy

There are gene therapies available for both hemophilia A and hemophilia B. Your healthcare team will be able to tell you if you’re eligible for these treatment options. Gene therapy helps your body get corrected copies of the genes that cause hemophilia.

Both of the available gene therapies for hemophilia are given just one time, as an infusion into a vein.

Coping With Infusions for Hemophilia

Needing an infusion can produce anxiety, particularly in children, people who don’t like needles, and people who are new to the concept of infusing medication. Fortunately, there are some things you can do to make it easier to cope with infusions.

Get Infusion Education

It takes time to learn how to do an infusion on yourself or your child. Learning how to do it well is important. If you aren’t comfortable with it yet, talk to a healthcare professional about what you can do to make the process easier. They may be able to give you additional instruction so you feel more confident infusing.

Hydrate, Hydrate, Hydrate

Drinking more water helps make your veins larger, which makes it easier to find them, accurately insert a needle, and start your infusion. While you should always stay hydrated, drinking extra water on the day of an infusion can make the process easier for you or your child.

One MyHemophiliaTeam member who had had trouble infusing before said that hydrating helped. “WE DID IT!” they shared. “Only two pokes, about 12 ounces of water, a heat pack, and like half an hour.”

Warm Up the Infusion Site

Adding gentle heat over the infusion site can also help make it easier to find a vein and start your infusion. Some experts recommend putting a warm cloth over the area. One member recommended using a combination of heat and ice: “I know they put ice and heat on my hand during my infusion, and it helped a lot.”

Distract Yourself

If infusions are stressful times, distracting yourself or your child might help. Don’t look at the needle while it’s being placed. Watch something that you or your child likes on a phone or a tablet during the infusion. If the needle prick itself is the worst part, consider offering another sensation at the same time. Some people dig their nails into their palms, but you could also try something like using a strong-tasting candy or making silly faces for your child while the needle gets placed.

Give Yourself Plenty of Time for the Infusion

If there’s a time of day when you feel your best or have more energy, you may want to schedule your infusion then. For your child, you might want to avoid school hours and do infusions as part of a bedtime routine. You should also make sure there’s plenty of time to recover after an infusion. Some people may bounce back, but others may need some time to care for themselves if infusions are stressful.

Get Financial Help

Apart from the stress or fear that some people feel around infusions, factor can also get expensive. Talk to your doctor and your insurance company about the cost of infusions. If you need help covering these costs, your doctor may be able to help you find ways to pay less.

Be Open With Your Bleeding Disorder Specialist

If you’re struggling with your own infusions or your child’s, be open with your care provider. They have dealt with worries and concerns around hemophilia infusions before, and they can help you figure out what will work for you and your family. You may never love infusions, but you should be able to get to the point where they’re a simple, straightforward part of life.

Join the Conversation

On MyHemophiliaTeam, people share their experiences with bleeding disorders, get advice, and find support from others who understand.

Do you have any tips for making hemophilia infusions easier? Let others know in the comments below.