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PubMed This is a summary of 17 peer-reviewed journal articles Updated
Hematology

Recognizing the Signs: When a Bleed Occurs

At a Glance

The earliest sign of a hemophilia joint bleed is often an 'aura' feeling like tingling or bubbling before visible swelling begins. Early treatment with factor infusion prevents joint damage. Seek immediate emergency care for head injuries, severe stomach pain, or bleeds that do not improve.

Because people with hemophilia lack certain clotting factors, internal bleeding can happen more easily and last longer than usual. Learning to recognize the early warning signs of a bleed is one of the most important skills for a patient or caregiver. Early treatment—often within the first hour—can prevent long-term damage to joints and tissues [1][2].

The “Aura”: Early Signs of a Joint Bleed

A joint bleed (hemarthrosis) is the most common type of internal bleeding in hemophilia. It typically affects the knees, elbows, and ankles [3].

  • The Early Stage (The Aura): Before there is any visible swelling, many patients describe a strange “feeling” in the joint. This is often called an “aura” and may feel like tingling, bubbling, warmth, or a “funny feeling” [4].
  • The Mid-Stage: As more blood enters the joint space, the area becomes warm to the touch, visibly swollen, and painful. The joint may feel stiff, and you or your child may “guard” the limb or refuse to move it [5][6].
  • The Late Stage: If untreated, the pain becomes intense and throbbing. The skin may look tight and shiny from the pressure of the blood. Repeated bleeds into the same joint can lead to permanent damage called hemophilic arthropathy [4][1].

Muscle Bleeds

A muscle bleed can occur in any muscle but is common in the calf, thigh, and upper arm. It often feels like a deep “pull” or a cramp that doesn’t go away. The muscle may feel hard to the touch or look larger than the one on the opposite side of the body [7].

Spontaneous vs. Traumatic Bleeds

  • Traumatic Bleeds: These follow a known injury, such as a fall, a sports injury, or a car accident.
  • Spontaneous Bleeds: In people with severe hemophilia (<1% factor), bleeding can happen for no apparent reason, often during sleep or normal daily activity [8][9]. These are common in joints and are a major reason why regular preventative treatment (prophylaxis) is recommended [10].

Life-Threatening Warning Signs

Some bleeds are medical emergencies. Intracranial Hemorrhage (ICH)—bleeding inside the skull—is the most dangerous and can happen after a head bump or even spontaneously in severe cases [11][12].

Seek emergency care immediately if you notice:

  • Head/Neck: Severe headache, sudden vomiting (especially without nausea), confusion, extreme sleepiness, or a stiff neck [13][14].
  • Mouth/Throat/Eye: Trauma to the mouth, throat, or eye, as these can rapidly compromise the airway or vision. Swelling in the neck or throat that makes it difficult to breathe or swallow.
  • Infants/Toddlers: Sudden, unexplained irritability, bulging of the “soft spot” (fontanelle) on the head, or sudden changes in feeding or sleeping patterns [15].
  • Abdomen/Torso: Sudden, severe pain in the stomach or back, or blood in the urine or stool.

ER Checklist: When to Go

If you suspect a major bleed, follow your “When to go to the ER” protocol provided by your hematologist. Generally, you should head to the ER if:

  1. There is a head, neck, or abdominal injury. Infuse factor first if you have it at home and have been trained to self-infuse, but do not delay calling 911 or heading to the ER if you are not ready [15].
  2. A bleed does not improve after a dose of factor.
  3. There is sudden, severe pain that prevents movement or sleep.
  4. You observe neurological changes like blurred vision, seizures, or loss of balance [13][14].

Note: Always keep your emergency factor and infusion supplies ready. Most experts recommend “When in doubt, infuse,” but always consult your specific treatment plan [16][17].

Common questions in this guide

What does a joint bleed feel like before it swells?
Before visible swelling occurs, a joint bleed often starts with an 'aura.' This early stage can feel like a tingling, bubbling, warmth, or a strange sensation inside the joint.
What is the difference between a spontaneous and traumatic bleed?
Traumatic bleeds happen after a known injury, like a fall or accident. Spontaneous bleeds occur without any apparent reason, often during normal daily activities or sleep, particularly in people with severe hemophilia.
When should I go to the emergency room for a hemophilia bleed?
Head to the ER immediately if there is a head, neck, or abdominal injury, or if you experience severe headaches, sudden vomiting, or neurological changes. You should also go if a bleed does not improve after a dose of factor or causes severe, sleep-disrupting pain.
Should I infuse factor before going to the ER?
If you suspect a major bleed and have been trained to self-infuse, you should infuse factor immediately at home before heading to the hospital. However, do not delay calling 911 or going to the ER if you are not prepared to infuse quickly.
How can I tell if an infant or toddler is having a head bleed?
Signs of a head bleed in infants include sudden unexplained irritability, bulging of the soft spot (fontanelle) on their head, or abrupt changes in their typical feeding and sleeping patterns.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What is the specific 'aura' or early feeling I should look for to distinguish a joint bleed from a normal muscle ache?
  2. 2.At what point after a head injury should we infuse factor, and at what point should we head straight to the ER?
  3. 3.What is the correct factor dosage for a major bleed versus a minor joint bleed?
  4. 4.How can we differentiate between a muscle bleed and a joint bleed in the hip or shoulder area?
  5. 5.Should we have a home ultrasound or other tool to help us identify subclinical bleeds?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (17)
  1. 1

    Complications of hemophilia in the elbow: current management.

    Rodriguez-Merchan EC, De la Corte-Rodriguez H

    Expert review of hematology 2020; (13(9)):991-1001 doi:10.1080/17474086.2020.1803061.

    PMID: 32723183
  2. 2

    Monitoring joint health in haemophilia: Factors associated with deterioration.

    Kuijlaars IAR, Timmer MA, de Kleijn P, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2017; (23(6)):934-940 doi:10.1111/hae.13327.

    PMID: 28873289
  3. 3

    Gene therapy for hemophilia: looking beyond factor expression.

    Yamaguti-Hayakawa GG, Ozelo MC

    Experimental biology and medicine (Maywood, N.J.) 2022; (247(24)):2223-2232 doi:10.1177/15353702221147565.

    PMID: 36691324
  4. 4

    Hemophilic arthropathy of the elbow: prophylaxis, imaging, and the role of invasive management.

    Dale TM, Saucedo JM, Rodríguez-Merchán EC

    Journal of shoulder and elbow surgery 2015; (24(10)):1669-78.

    PMID: 26385390
  5. 5

    Serological biomarkers detect active joint destruction and inflammation in patients with haemophilic arthropathy.

    Hua B, Olsen EHN, Sun S, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2017; (23(4)):e294-e300 doi:10.1111/hae.13196.

    PMID: 28439941
  6. 6

    Self-reported prevalence, description and management of pain in adults with haemophilia: methods, demographics and results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study.

    Witkop M, Neff A, Buckner TW, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2017; (23(4)):556-565 doi:10.1111/hae.13214.

    PMID: 28419637
  7. 7

    Merging into the mainstream: the evolution of the role of point-of-care musculoskeletal ultrasound in hemophilia.

    Bakeer N, Shapiro AD

    F1000Research 2019; (8()) doi:10.12688/f1000research.16039.1.

    PMID: 31431824
  8. 8

    Clinicopathological Parameters of Haemophilia Patients at a Tertiary Care Centre in Northern India.

    Singh A, Rawat S, Kushwaha R, et al.

    Cureus 2023; (15(7)):e41670 doi:10.7759/cureus.41670.

    PMID: 37575728
  9. 9

    Acute Abdominal Crisis in Type A Hemophilia: Unraveling Retroperitoneal Hematoma: A Case Report.

    Althobaiti HA, Alabou Houseen BF, Alsaqqa EM, et al.

    The American journal of case reports 2024; (25()):e944694 doi:10.12659/AJCR.944694.

    PMID: 39161073
  10. 10

    Hemophilia Joint Health Score, Functional Independence Score in Hemophilia, and Pettersson Score in Pediatric Patients With Severe Hemophilia A.

    Mabrouk AG, Abbas MAE, Ezzat DA, et al.

    Journal of pediatric hematology/oncology 2023; (45(6)):344-348 doi:10.1097/MPH.0000000000002692.

    PMID: 37314882
  11. 11

    Management of intracranial hemorrhage in hemophilia A patients.

    Aras M, Oral S

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2020; (36(9)):2041-2046 doi:10.1007/s00381-020-04528-3.

    PMID: 32025871
  12. 12

    Intracranial haemorrhage in children with inherited bleeding disorders in the UK 2003-2015: A national cohort study.

    Chalmers EA, Alamelu J, Collins PW, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2018; (24(4)):641-647 doi:10.1111/hae.13461.

    PMID: 29635852
  13. 13

    Intracranial hemorrhage in congenital bleeding disorders.

    Tabibian S, Motlagh H, Naderi M, Dorgalaleh A

    Blood coagulation & fibrinolysis : an international journal in haemostasis and thrombosis 2018; (29(1)):1-11 doi:10.1097/MBC.0000000000000660.

    PMID: 28901996
  14. 14

    Epilepsy and Other Neurological Complications in Pediatric Patients With Hemophilia Complicated With Intracranial Hemorrhage: A Retrospective Case Series.

    Eguchi Y, Ishikawa N, Kobayashi Y, et al.

    Cureus 2024; (16(11)):e74261 doi:10.7759/cureus.74261.

    PMID: 39717343
  15. 15

    Acute Life-Threatening Hemorrhage in Neonates With Severe Hemophilia A: A Report of 3 Cases.

    Moreira A, Das H

    Journal of investigative medicine high impact case reports 2018; (6()):2324709618800349 doi:10.1177/2324709618800349.

    PMID: 30246038
  16. 16

    Current challenges in the management of hemophilia.

    Bauer KA

    The American journal of managed care 2015; (21(6 Suppl)):S112-22.

    PMID: 26168206
  17. 17

    Acute coronary syndrome management in hemophiliacs: How to maintain balance?: A review.

    Chen H, Yang S

    Medicine 2023; (102(11)):e33298 doi:10.1097/MD.0000000000033298.

    PMID: 36930106

This page provides educational information about recognizing hemophilia bleeds. Always follow your hematologist's emergency protocol and seek immediate emergency medical care for head injuries or severe bleeds.

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