If you or someone you love is living with severe hemophilia A or hemophilia B, you’re likely well aware that joint bleeds can be painful and cause long-term damage. It’s important to learn how to protect your joints from injury.

Symptoms of Joint Bleeds

Hemarthrosis, the medical term for bleeding into joints, can be painful and make it hard to move. One MyHemophiliaTeam member wrote, “I just had a bleed in both of my elbow joints. What could be worse? I can’t eat and am unable to do the usual things. Can’t lie down and get up, can’t brush my teeth.”

Some people realize right away when they have a joint bleed, though it may take a while if the joint is large and the bleed is small. Symptoms of a joint bleed include:

• A tingling feeling in the joint
• A warm feeling in or around the joint
• A difficult-to-explain feeling called an aura

Chronic and Recurrent Bleeds

Most people tend to have recurrent (repeated) bleeds in the same joint. When a joint has three or more spontaneous bleeds over a period of six consecutive months, doctors call it a target joint. These joints become weaker with time and require special care and attention.

Bleeds that don’t stop or repeated bleeds in the same joint can lead to:

• Chronic pain
• Muscle weakness
• Mobility problems
• Hemophilic arthropathy, a joint disease associated with hemophilia
• Disability

Tips for Protecting Your Joints

If you’re living with a severe bleeding disorder, there are several steps you can take to protect your joints and lower your risk of serious joint problems in the future.

1. Reach or Maintain a Healthy Weight

If you’re carrying excess weight, losing a few pounds may help protect your joints. When you walk, your knees and ankles take approximately five times your body weight with every step. Since these joints are often affected by hemophilia bleeds, reducing the weight they bear by even a little bit could make a significant difference. Losing 10 pounds can reduce the weight these joints bear by around 50 pounds.

Losing weight with hemophilia can be a challenge, especially if the condition makes exercising difficult for you. However, working with your doctor to find the right combination of diet and exercise could make a big difference for your body. In general, a good place to start is eating more fruits, vegetables, and whole grains while reducing your intake of sugar, fat, and salt.

The idea of a healthy weight can be more complicated than it seems. Be sure to talk to your doctor before starting a diet.

2. Exercise Within Your Limits

Although it may seem counterintuitive, exercise and physical activity are important for people living with hemophilia. When your muscles are stronger, they do a better job of protecting your joints and helping you recover after a joint bleed. One member of MyHemophiliaTeam said, “We need to exercise and walk to keep the joints operational. The moment you give in, you get lazy, and that’s the beginning of the end!”

Exercise can also reduce the number of joint bleeds you experience, which does even more to improve your joint health and help reduce joint pain. It’s also a great way to get your joints moving again after a bleed to help avoid stiffness and freezing and maintain your range of motion.

Aquatic exercises, including swimming and hydrotherapy, have been shown to help improve muscle strength and physical abilities in people with hemophilia. Water naturally provides a safe environment where you can exercise without developing stress-related injuries.

Talk to your doctor before starting an exercise routine. They can make sure you’re taking the right amount of clotting factor (the medicine that helps your blood clot) for exercise and that you’re doing the exercises safely. They may also recommend working with a physical therapist.

3. Treat Bleeds With Factor Quickly

As soon as you think you may have a joint bleed, treat it with enough clotting factor right away, as your doctor has instructed. Continue infusions until your symptoms improve. Treating a bleed as soon as possible can help limit joint damage.

If you’ve experienced a joint bleed, use the acronym POLICE to remember other steps you can take to reduce symptoms.

• Protection — Soon after the injury, rest the joint and keep weight off of it for a few days.
• Optimum loading — Minimize rest and gradually use your joint while keeping track of symptoms.
• Ice — Wrap ice in fabric to prevent skin damage and limit it to 15 to 20 minutes at a time.
• Compression — Wear a brace or wrap to hold pressure and reduce inflammation.
• Elevation — Keep the joint above heart level to minimize swelling.

Note that your hemophilia treatment center may give you more specific instructions, and you should follow their advice if it differs from the advice you read here or elsewhere.

4. Avoid Food or Drugs That Raise the Risk of Bleeding

Your doctor may have given you a list of medications, foods, and supplements that can increase your risk of bleeding. To give your joints the ultimate in protection, avoid foods, supplements, medications, and other items, including:

• Black cohosh
• Bromelain
• Cat’s claw
• Feverfew
• Fish oil
• Flaxseed
• Garlic
• Ginger
• Ginkgo biloba
• Pau d’arco
• Vitamin E, especially in high doses
• Nonsteroidal anti-inflammatory drugs (NSAIDs), like aspirin, ibuprofen, or naproxen

People with hemophilia should avoid most NSAIDs because they increase bleeding risk. However, in certain cases, your doctor may approve COX-2-selective NSAIDs (like celecoxib). For pain relief, acetaminophen (Tylenol) remains a first-line choice for hemophilia.

If you’re thinking about consuming any of these, talk to your doctor first. They can help you weigh potential benefits against the potential risk that they may cause or worsen bleeding.

5. Consider Joint Aspiration

Some severe joint bleeds may not respond to treatment with factor, or swelling may not go down even though the bleed has stopped. In these cases, talk to your doctor about joint aspiration. This procedure isn’t routinely performed unless your doctor is concerned about an infection or the joint is extremely swollen and painful.

In this procedure, often performed at a specialized hemophilia treatment center, blood is removed from the affected joint with a needle. This may help your joint recover faster and avoid long-term damage, while also alleviating pain and swelling.

Note that sometimes your doctor will recommend an MRI scan before an aspiration to see the joint clearly.

6. Keep Up With Joint Rehabilitation

If your doctor has recommended physical therapy or physiotherapy to help after a joint bleed or in order to prevent one, make sure you keep up with the exercises. These are specifically designed to help your body recover well and prevent long-term joint damage.

Physical therapy exercises can get tedious, especially if you’re doing them long term. Make the process more fun by watching a program you like while you do them, or by rewarding yourself for any week in which you do the entire regimen as outlined by your therapist. Once you see how the exercises help your joints recover and/or prevent future bleeds, you may be even more motivated to continue them.

7. Stick to Your Prophylactic Treatment

You and your doctor have likely talked about what you need to do to prevent as many bleeds as possible. This can involve:

• Using factor replacement therapy as a prophylaxis (taking it before you have a bleed) on a schedule
• Taking various medications to enhance clotting

Factor Therapy

Some people who have received factor replacement therapy for a long time eventually develop inhibitors, substances in the blood that make you stop responding to factor therapy. In these cases, a doctor may prescribe a different type of medicine to help prevent bleeds.

Nonfactor Therapy

Other prevention treatments are nonfactor therapies that include:

• Emicizumab (Hemlibra) for people with hemophilia A with or without inhibitors
• Concizumab (Alhemo) for people with hemophilia A or B with inhibitors
• Fitusiran (Qfitlia) for people with hemophilia A or B with or without inhibitors

These are subcutaneous (under the skin) injections that help reduce how often you have bleeds.

Gene Therapy

New gene therapies for hemophilia A and B have shown promising results. In clinical trials, gene therapy for hemophilia A reduced bleeds by at least 52 percent and seemed to reduce joint bleeds, too. Gene therapy for hemophilia B, in clinical trials, reduced joint bleeds by an average of 78 percent after 18 months. Examples of gene therapy approved for adults with hemophilia include:

• Valoctocogene roxaparvovec-rvox (Roctavian) for adults with severe hemophilia A and no anti-AAV5 antibodies
• Etranacogene dezaparvovec-drlb (Hemgenix) for adults with hemophilia B

The long-term success of gene therapies varies depending on the drug and follow-up time. The goal of these therapies is fewer joint bleeds, which would mean a lower chance of experiencing joint damage over your lifetime. Talk to your hematology team about which treatment options may be most effective for you in reducing joint bleeds in the short and long term.

Whatever your doctor recommends, stick with it consistently to get the most benefit from your regimen. If you can’t stick with part of it, or if you have questions, make sure you bring this up with your healthcare provider. They can help you find a program that works for you to keep your well-being and quality of life high.

Join the Conversation

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

What steps do you take to protect your joints if you have severe hemophilia? Let others know in the comments below.