Managing Bleeding Episodes

An important step in home treatment of hemophilia is the early recognition of a bleed. Bleeding is obvious when it is external, as in the cases of cuts and nosebleeds; however, when bleeding is internal, as in a joint bleed or head bleed, early recognition is not as easy.

In general, bleeds are accompanied by feelings of pain, tingling, or warmth. If you suspect a bleed, follow the appropriate instructions below.

Note that infusion will always be required following serious injuries and following any injury that has required infusions in the past. The presence of localized pain, swelling, tingling, or warmth are strong indicators that infusion will be necessary.

Minor injuries including bruises, cuts, scrapes, gum bleeds and nosebleeds usually do not require treatment with clotting factor. Check with the treatment center if you have questions about these types of injuries.

Bruises

Bruises result from a small amount of bleeding under the skin that is often accompanied by a small knot that can be felt in the center of the bruised area. Bruising is common in people with hemophilia.

Treatment  

Clotting factor replacement is not needed for most bruises. Contact the treatment center if pain or swelling increases or persists.

Follow-Up

As a bruise disappears, the bluish color may fade to a green or yellow appearance. Most bruises take two weeks to disappear. Note that the normal handling of babies with hemophilia can cause bruising. Most bruises are not painful and should not affect normal activities.

Additional Information 

Bruises commonly occur on the head, trunk and extremities in children with hemophilia. As bruises heal, the discoloration may extend into surrounding tissues. For example, a forehead bruise can result in blackening around the eyes.

Cuts and Scrapes (No Sutures) 

Minor cuts and scrapes that result in only a small amount of bleeding do not require treatment with clotting factor.

Treatment  

Follow standard first aid procedures for cuts that do not require stitches:

  • Clean the injured area with soap and water.
  • If bleeding occurs apply firm pressure for several minutes.
  • Apply a bandage with an antibiotic ointment and change it at least daily, or more often as necessary.

Follow-Up  

Contact the treatment center if bleeding persists. Watch for signs of infection, including redness and swelling. 

Cuts and Scrapes (Requiring Sutures) 

Factor replacement therapy is always necessary for a cut (laceration) that requires stitches. You should also contact the treatment center if stitches are involved.

Treatment  

Clotting factor replacement is necessary prior to suturing (stitching) wounds and prior to removing sutures. Follow these guidelines:

  • Administer a double dose of coagulation factor prior to receiving stitches.
  • Treat with a single dose of clotting factor for three to five days (check with the treatment center).
  • Administer a dose of clotting factor prior to removing stitches.

Follow-Up 

Keep the area clean and dry to promote healing.

Additional Information 

Contact the treatment center if bleeding persists or signs of infection develop such as redness and swelling. 

Gum Bleeds 

Bleeding can result from an injury to the gums, tongue, or cheek. Bleeds in these regions that persist for longer than 20 to 30 minutes, or that stop and start repeatedly, require treatment.

Treatment 

Treat persistent gum bleeds with the administration of clotting factor and Amicar, an oral medication that prevents the breakdown of clots in the mouth. Follow these two guidelines:

  • Administer a single dose of clotting factor.
  • Only after the administration of factor, treat with Amicar.

Follow-Up 

A soft diet is recommended. Discourage the use of straws to prevent the dislodging of clots. Contact the treatment center if mouth bleeding continues or recurs.

Additional Information 

  • Consult the treatment center for dental work that requires an anesthetic injection. Clotting factor could be necessary.
  • Swallowed blood can upset the stomach and cause vomiting.
  • The loss of baby teeth rarely requires treatment.
  • It is often difficult to measure the amount of blood loss with mouth bleeding. Contact the treatment center if bleeding recurs.
  • Anemia can occur from prolonged bleeding. Signs of anemia might not be evident but they can include fatigue, headache, dizziness and pale skin. If these symptoms are present, contact the treatment center.

The following measures will reduce the risk of gum bleeds:

  1. Maintain good dental care and hygiene. Note that tooth brushing can irritate an injured area. Using a swab instead to clean teeth may be helpful. 
  2. Avoid placing hard objects like pencils or paper clips in the mouth. 

Nosebleeds 

Nosebleeds are a nuisance but rarely require treatment. Nose bleeding can be aggravated by dry air, picking, injury, or it can result from respiratory illnesses or allergies. Nosebleeds caused by a head or face injury should be evaluated by the treatment center.

Treatment 

First aid procedures for nose bleeding should control the episode:

  • Gently blow out loose clots.
  • Pinch the soft tissue of the nostrils together with the thumb and forefinger for 10 minutes. Note that pinching the hard bone or cartilage on the bridge of the nose is not helpful.

Follow-Up 

If bleeding persists for longer than 20 minutes, contact the treatment center.

Additional Information  

  • Tilt the head forward to reduce swallowing blood during a nosebleed.
  • If blood is swallowed, then vomiting, upset stomach and dark stools may occur.
  • Cauterization and forceful packing of the nose can cause additional injury (these practices are not recommended).
  • Decongestant nose drops (Afrin) are useful after a nosebleed to help constrict the blood vessels and slow the bleeding.

Reduce the risk of nosebleeds during dry, winter months by:

  1. Keeping nasal membranes moist with petroleum jelly or saline nose drops
  2. Running a vaporizer or humidifier to keep the air moist

Muscle Bleed 

Bleeding can occur in the muscle groups of the shoulder, upper arm, forearm, thigh and calf. In these areas, swelling or pain usually accompanies the bleeding. Bleeding into muscles can occur with no visible signs such as bruising.

Signs and Symptoms 

Early

  • Tingling sensation
  • Feeling of warmth

Late

  • Difficulty in movement
  • Pain with movement
  • Tightness or swelling, possibly even when muscle is at rest
  • Numbness or tingling feeling (may be described as feeling "asleep")
  • Area is warm to the touch

Treatment 

Treat muscle bleeds according to the following guidelines:

  • For forearm or calf bleeds, administer a double dose of clotting factor and call the treatment center.
  • For other sites, administer a single dose of clotting factor.
  • If symptoms persist for 12 to 24 hours, repeat the treatment.
  • Attempt to relieve pain and swelling by elevating the injured limb and by using ice and acetaminophen (Tylenol).
  • Avoid bearing weight until pain and swelling resolve.

Follow-Up 

Contact the hemophilia treatment center within three days if any of the following situations arise:

  • Symptoms worse and movement continues to be painful
  • Treatment does not restore full movement

Additional Information 

  • Always contact the treatment center immediately for bleeding into the forearm or calf. (Untreated or inadequately treated bleeding into these areas can cause damage by compressing vital nerves and blood vessels.)
  • Never treat a muscle bleed for more than three days without contacting the treatment center.
  • Exercise regularly to strengthen muscles and reduce the number of bleeding episodes.
  • Remember that untreated muscle bleeds can lead to long-term damage. 

Joint Bleeds 

Bleeding can occur in any joint of the body. Joints most commonly involved include the shoulders, elbows, wrists, hips, knees and ankles. Bleeding into joints can occur with no visible bruising.

Signs and Symptoms 

Early

  • An "aura" or feeling that something is wrong with the joint
  • A feeling of bubbling, tingling or warmth in the joint

Late

  • Area that is warm to the touch
  • Stiffness of joint
  • Pain
  • Swelling
  • Inability or refusal of patient to straighten joint or to bear weight
  • Limited movement

Treatment 

Treat joint bleeds according to the following five guidelines:

  • For hip or groin bleeds, administer a double dose of clotting factor and contact the treatment center.
  • For other sites, administer a single dose of clotting factor.
  • If symptoms persist for 12 to 24 hours, repeat treatment.
  • Attempt to relieve pain and swelling by elevating the injured limb and by using ice and acetaminophen (Tylenol)
  • Avoid weight bearing until pain and swelling resolve.

Follow-Up 

Contact the hemophilia treatment center within three days if any of the following situations arise: 

  • Symptoms worsen and movement continues to be painful.
  • Treatment does not restore full movement.

Additional Information 

  • A joint bleed should never be treated at home for more than three days without contacting the treatment center.
  • Untreated or repeated joint bleeding leads to permanent damage.
  • Regular exercise strengthens muscles and protects joints.
  • Excess body weight places stress on joints.
  • Special treatment may be needed for bleeding episodes associated with pain in the hip, lower abdomen, groin, or thigh. (Contact the treatment center for an immediate evaluation.) 

Normal Joints 

A joint is the space where two bones meet. Each joint is surrounded by a synovial membrane that secretes a clear fluid called synovial fluid. This fluid lubricates the joint space to reduce friction and to make joint movement smooth. By keeping the bone ends from rubbing together, the synovial fluid protects the bones from wear and tear.

Early Joint Bleeding 

When a tear occurs in the blood vessels of a joint, blood begins to leak into the synovial space. Early signs of a joint bleed are a bubbling or tingling feeling or a feeling of localized warmth. The bleeding episode will stop if factor replacement therapy is given right away.

Late Joint Bleeding 

Without treatment, the bleeding episode will stop only when the joint space is completely filled with blood. At that point, the joint structure (or capsule) has been stretched, causing much discomfort. Signs of a late joint bleed can include swelling, heat, stiffness and pain. A bent knee may be the only position that brings relief; however, leaving the joint in a bent position too long may result in severe muscle contraction that makes the joint difficult to straighten.

A severe joint bleed will require several days of treatment with factor replacement therapy. Physical therapy and splinting may be necessary to regain previous movement. 

The Serious Consequences of Inadequately Treated Joint Bleeds 

Untreated or inadequately treated, joint bleeds lead to two chronic conditions, synovitis and arthritis, as described below. The ultimate outcome of unchecked bleeding is complete destruction of the joint.

The first condition associated with joint bleeds that are not treated early and adequately is synovitis. This condition is an inflammation of the synovial membrane that lines the joints. Joints commonly involved with synovitis include the knee, ankle, wrist, elbow and shoulder. The accumulation of blood irritates the synovial membrane, causing the lining to swell and develop more blood vessels making it more likely to bleed again. The joint becomes boggy and appears swollen.

Symptoms of Synovitis 

The following symptoms are characteristic of synovitis:

  • The joint feels swollen or spongy even when there is not active bleeding.
  • An increased number of bleeds occur in the same joint.
  • No pain or loss of motion is observed in the joint except during active bleeding.

Treating Synovitis 

If symptoms of synovitis are encountered, contact the treatment center. Recommended treatments may include the following:

  • Treatments to help prevent further bleeding while the membrane returns to normal
  • Oral medications such as steroids to reduce inflammation
  • Physical therapy to reduce discomfort and strengthen joint and muscles
  • A surgical procedure called a synovectomy where part or all of the synovial membrane is removed (Synovectomy does not improve motion but can reduce further bleeding and joint destruction.) 

Preventing Synovitis 

The following three steps will help to prevent synovitis:

  • Treat joint bleeds as soon as possible.
  • Exercise regularly.
  • Make regular clinic visits to the treatment center.

The second condition resulting from inadequately treated joint bleeds is arthritis. Arthritis is a degenerative joint disease that occurs as inflammatory cells in the body attempt to clean up the blood that accumulates within the joint space. These inflammatory cells can also destroy the cartilage that pads the joint space. As the joint is damaged, muscles weaken and more bleeding occurs. Over time, the cartilage becomes pitted and uneven, making movement painful. This damage is irreversible and difficult to treat; thus, early and effective treatment of joint bleeds is an essential step in preventing arthritis.

Symptoms of Arthritis 

The following symptoms are characteristic of arthritis:

  • Pain and aching in the joints
  • Stiffness
  • Decreased flexibility
  • Feeling that the limb is "frozen" in place
  • Gradual muscle weakening

Treating Arthritis 

Arthritis is difficult to treat because the joint damage cannot be reversed. Use the following measures to minimize the discomfort and maximize function:

  • Exercise that maintains movement and strengthens muscles
  • Anti-inflammatory drugs to decrease swelling
  • Non-aspirin-containing pain medications to treat discomfort
  • Splints or other supports to aid in movement 

Preventing Arthritis 

The following three measures will help patients with hemophilia avoid the debilitation of arthritis:

  • Treat with regular prophylactic infusions, or treat joint bleeds early.
  • Take part in a regular exercise program.
  • Make regular visits to the treatment center.

Many serious bleeding episodes are not easily visible. Significant injury or suspected bleeding in any of the following areas requires immediate medical attention:

  • Head (intracranial bleed)
  • Eye
  • Throat or neck
  • Lower back or abdomen (gastrointestinal or urinary tracts)
  • Iliopsoas (loin muscles of thigh and pelvis)

For all suspected bleeding episodes in these sites, remember the following:

  • Infuse a double dose of clotting factor as soon as a bleed is suspected.
  • For bleeding in these sites, contact the treatment center or come to the emergency department as soon as possible.

Head (Intracranial) Bleeds 

Intracranial bleeding involves bleeding in and around the brain. Bleeding in this area can occur suddenly with a rapid onset of symptoms, or it can develop slowly over several days. Head bleeding can occur as the result of a known injury without any apparent cause.

Signs and Symptoms 

Symptoms associated with intracranial bleeds:

  • Severe or prolonged headache
  • Seizures
  • Confusion
  • Unusual drowsiness or difficulty in arousal
  • Unexplained irritability in infants
  • Loss of consciousness
  • Unequal pupil size or discomfort in bright light
  • Slurred speech
  • Vomiting
  • Stiff neck or back
  • Onset of poor circulation
  • Any numbness, tingling, or loss of feeling

Treatment 

Seek medical care immediately. All suspected intracranial bleeds require immediate treatment with clotting factor. Confirmed bleeds require hospitalization.

Follow-Up 

Your physician will advise you about physical activity limitations and the need for additional treatment.

Additional Information 

  • Call the treatment center for any questions regarding head injury.
  • Many intracranial bleeds occur with no known history of head injury.
  • Significant head injuries should be treated with clotting factor first and then evaluated.
  • Any injury leading to loss of consciousness needs immediate evaluation and treatment.
  • Deciding which head bumps require treatment is a difficult one. (Toddlers receive frequent bumps to the head that usually do not require treatment.)
  • Some families of younger children find comfort in the use of a soft helmet to reduce the risk of head injury 

Eye Bleeds 

Bleeding inside the eye can occur because of injury, or it can occur spontaneously without any known cause.

Signs and Symptoms 

The following items will help identify the presence of an eye bleed:

  • An injury to the eye or near the eye
  • Discoloration of the white of the eye
  • Pain in or around the eye
  • Double or blurred vision
  • Swelling
  • A sudden change in vision

Treatment 

Bleeding into the eye requires medical attention and treatment with clotting factor.

Follow-Up 

Continued clotting factor replacement is required until the bleeding episode has resolved.

Additional Information  

  • Untreated bleeding in the eye can damage the optic nerve and cause permanent loss of vision.
  • Patients should wear protective goggles when playing or performing tasks having a higher risk of eye injury. (Discourage patients from playing with sharp objects, especially while running.)

Throat and Neck Bleeds 

Bleeding into the throat or neck can lead to blockage of the airway. Immediate medical attention is required. Throat and neck bleeds usually have one of the following three origins:

  • Injury
  • Spontaneous, with no apparent cause
  • Tonsillitis

Signs and Symptoms 

  • Swelling of the neck
  • A choking feeling
  • Coughing or vomiting blood in the absence of a nose or mouth bleed
  • The unexplained and sudden onset of hoarseness
  • Difficulty breathing
  • Difficulty swallowing

Treatment

Bleeding into the throat or neck requires immediate medical attention and treatment with clotting factor.

Follow-Up

Continued factor replacement is required until the bleeding episode has resolved.

Additional Information 

All injuries of the throat and neck are potentially serious and should be treated. They should also be evaluated by the treatment center physician. 

Gastrointestinal Bleeds

The gastrointestinal tract consists of the stomach and the small and large intestines. Gastrointestinal bleeds usually have one of the following four origins:

  • Injury to the abdomen
  • Spontaneous, with no apparent cause
  • Ulcer
  • Prolonged and forceful vomiting

Signs and Symptoms 

  • Vomiting blood that may resemble coffee grounds
  • A black or tar-like stool
  • Pain in the abdomen
  • Headache, weakness and dizziness on standing, which can indicate significant blood loss

Treatment

Contact the treatment center immediately. Gastrointestinal bleeding must be treated immediately with clotting factor. Abdominal pain should be treated with factor replacement until the cause is found.

  • Small amounts of bright red blood in the stool can result from rectal trauma caused by constipation, straining, or hard stools
  • Continual blood loss, even in small amounts, can lead to anemia; therefore, if bleeding continues, contact the treatment center

Urinary Tract Bleeds 

The urinary tract includes the kidneys, ureters, bladder and urethra. When urinary bleeding occurs, a medical evaluation is necessary. Blood in the urine can result from an injury, infection, or spontaneously with no apparent cause.

Signs and Symptoms 

  • Urine that appears either bright red or has a deep brown cola color
  • Pain in the lower back or groin
  • Painful or frequent urination

Treatment 

Treatment includes a double dose of clotting factor. Steroid therapy (Prednisone) may also be helpful. Increased fluid intake and bed rest are also important in managing urinary tract bleeds.

Note that clotting factor replacement can cause unwanted clots to form in the kidney that can be very difficult to pass. To reduce the chance of this occurrence, increase fluid intake. Always contact the treatment center with urinary tract bleeds.

Follow-Up 

Your physician will advise you about the need for additional treatments and limiting physical activity after a urinary tract bleed.

Iliopsoas Bleeds 

The iliopsoas muscle group is located in the pelvic region. It connects the lower spine and upper thigh to allow for leg movement and rotation. Significant bleeding into the iliopsoas muscle can occur before the onset of symptoms.

Signs and Symptoms 

  • Pain in the hip, groin, abdomen, buttocks, lower back, or thigh
  • Pain when the hip is straightened
  • Numbness or tingling along the outside of the upper thigh

Treatment

Call the treatment center for all suspected iliopsoas bleeds. These bleeds must be evaluated by a physician. Bleeding into the iliopsoas muscle group always requires treatment with clotting factor. Iliopsoas muscle bleeds can be confirmed by an ultrasound or CT scan. Hospitalization may be required.

Follow-Up

After clotting factor replacement, again contact the treatment center if the pain recurs or mobility is limited.

Additional Information

Bleeding in the iliopsoas muscle group can be mistaken for a hip bleed, appendicitis, or a pulled groin muscle, yet untreated iliopsoas bleeding can lead to significant blood loss and permanent damage. It is therefore very important to properly identify and treat an iliopsoas bleeding episode.

If you treated a specific bleed or have received prophylactic treatment, download and complete the appropriate treatment log and submit the form to the hemophilia treatment center. Forms should be submitted each month to help maintain the most accurate record of bleeding episodes.

Menstrual Flow Charts

For each period, use one or more sheets as needed. Record pad / tampon use throughout each day. Bring completed sheets to clinic to discuss with staff. 

Weekdays

The Outpatient Clinic is open Monday-Friday, 8:30 am-4 pm. It is best to call one of the hemophilia nurses before you come to the clinic so that arrangements can be made for the treatment while you are on your way. 

Evenings, Weekends and Holidays 

Treatment is available through the hospital emergency department. Call the hospital operator at 513-636-4200 and ask for the hematologist on call before coming to the emergency room. Bring your emergency identification card when visiting the emergency department. It will provide confirmation for the emergency department staff about the bleeding disorders and treatment.


Last Updated 12/2013