When to seek urgent medical help

If you have had a significant injury, or are having a bleed, you will need treatment for your bleeding disorder as soon as possible. This will minimise bleeding and associated problems.

Treatment delays will lead to more serious bleeds and longer recovery times.

• If you can self-treat, and you have clotting factor replacement, you should administer a dose of factor replacement as soon as possible, and seek urgent medical advice.
• If you cannot self-treat, it is important to get medical attention as soon as possible. If you go to a local hospital, take any treatment you have at home with you, as not all hospitals stock factor replacement.

Let the haemophilia team know as soon as possible so we can give advice.

Types of bleeding requiring medical attention

Bleeds into joints and muscles can cause pain, swelling, problems moving, and sometimes pins and needles (if nerves are affected). These symptoms can all happen before bruising can be seen.

Other bleeding symptoms that need medical attention:

• vomiting blood
• coughing up blood
• blood in your poo (this might look like blood, or be black and tar-like)
• unexplained back pain, especially if it is difficult to move a leg (which could be a symptom of a bleed into a back muscle)
• getting a sudden, severe unusual headache, especially if you have any associated problem with vision, speech, movement or sensation (as these could be symptoms of a bleed in the brain)
• any other unusual or troublesome bleeding

You should make sure that all bleeds and treatments are recorded on Haemtrack.

Always tell the haemophilia team if you need emergency surgery, dental work, or other medical procedures, so that we can advise on treatment to prevent bleeding complications.

Managing a haemophilia joint or muscle bleed at home

Bleeds into joints or muscles usually only happen in severe bleeding disorders. This is usually in severe or moderate haemophilia A and B.

How to recognise a joint or muscle bleed

The general symptoms are:

• pain
• heat
• a tingling or pulling sensation, with difficulty moving the affected joint or limb
• possibly bruising

Early treatment of a joint or muscle bleed is essential. It can minimise the risk of long-term damage.

What you can do to help yourself

Give yourself treatment as soon as possible after a bleed. You will have been advised by the haemophilia team about what treatment you need. This will vary depending on your diagnosis and your current treatment plan. It might include treatment with clotting factor replacement, desmopressin (DDAVP), or tranexamic acid.

If you need treatment but do not have any at home or cannot treat yourself, you need to go to hospital as soon as possible. Ideally, you should go to a hospital that has a haemophilia centre, as they will have the right treatments available.

You should let your haemophilia team know as soon as possible about a suspected muscle or joint bleed. This is so we can give treatment advice and arrange a review in the Haemophilia centre. You should make sure that all bleeds are recorded on Haemtrack. Our nurses or physiotherapy team will follow up any bleeds recorded on Haemtrack.

You should also remember the word PRICE. This is an easy way to remember extra things you can do to help yourself.

Protection

Reduce weight and stress on the affected joint or muscle by using crutches or other supports. Ideally, for the first 24 to 48 hours, you should decrease (or avoid if possible) full weightbearing on a joint that has bled. If the bleed is significant, you might be advised to reduce weightbearing for a few weeks. This will minimise the impact of bleeding on the joint.

Rest

At first, the affected area should be rested completely. This allows the swelling to reduce, and reduces the risk of further bleeding. The injured area should not be forced into any position, but rested in a comfortable position.

Ice

Ice might help to reduce swelling and ease pain. You can make an ice pack out of a bag of frozen vegetables, or crushed ice, wrapped in a cloth. Ice packs can be applied to the area for short periods of time (less than 10 minutes). This can be repeated over a few hours. Make sure that the ice is well wrapped so there is no direct contact with the skin, as it can damage the skin.

Compression

A joint or muscle bleed will cause pressure build-up within a joint or a muscle. This is because of the build up of blood, but also because the blood irritates the surrounding tissue, causing swelling.

Some people find that placing an elastic compression bandage (Tubigrip^®) over the affected area makes it more comfortable. This is because it may reduce tissue swelling.

If you use a compression bandage, it should be slightly tight (like a pair of tights). Try to avoid wrinkles in the bandage. Remove the compression bandage at night. Any bandage should increase comfort, not cause discomfort. If a compression bandage makes symptoms worse, remove it and do not use.

Using a compression bandage will not have any impact on the blood that has already leaked into the muscle or joint. The body will have to slowly reabsorb this over time.

Elevation

This is another way to help reduce swelling and pain. If done early (while bleeding is ongoing), raising the area above your heart might reduce blood flow to the area. It will also help to move any tissue-swelling away from the area.

You can raise (elevate) the area for about 20 minutes. This can be repeated after 15 to 30 minutes rest. You can continue this for as long as it provides relief from symptoms.

Review after a bleed

We always advise patients to either come to the Haemophilia centre or have a phone consultation with the physiotherapist, for advice about any further management that is needed. This is to make sure that you recover as well as possible, and to reduce the risk of bleeding events, or complications related to bleeding events.