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

Living with AIHA: Complications, Monitoring, and Survivorship

At a Glance

Living with AIHA is a chronic process that requires ongoing monitoring. Patients should learn their baseline lab values to detect flares early, watch for warning signs like jaundice or dark urine, and understand their increased risk for blood clots during active hemolysis.

Living with Autoimmune Hemolytic Anemia (AIHA) often means transitioning from a state of emergency to a phase of long-term management. For many, AIHA is a chronic, relapsing condition [1][2]. While the goal of treatment is remission—a state where your blood counts are stable and you feel well—the word “cured” is rarely used because the immune system can “flare” or reactivate in the future [1][3].

Monitoring: Your “Baseline” is Key

Once you achieve remission, your doctor will likely move you to a routine monitoring schedule. During these visits, they will check your “hemolysis panel” (CBC, LDH, Bilirubin, and Haptoglobin) [4].

It is incredibly helpful to know your baseline—the typical lab values you have when you are feeling healthy. Knowing your baseline Hemoglobin and LDH helps you and your doctor identify a flare-up early, sometimes even before you feel symptoms [5].

Recognizing a Hemolytic Crisis (Flare)

A flare, or acute hemolytic crisis, is a period of rapid red blood cell destruction. This is an emergency that requires immediate medical attention [6][7]. Watch for these “red flag” symptoms:

  • Sudden Jaundice: Notable yellowing of the eyes or skin [8].
  • Dark, Tea-Colored Urine: A sign that your kidneys are filtering out a high volume of destroyed red blood cell debris [9].
  • Severe Breathlessness: Feeling winded while sitting still or doing minor tasks [10].
  • Rapid Heartbeat: Your heart pumping faster to compensate for the lack of oxygen in your blood [6].

The Risk of Blood Clots (VTE)

Patients with AIHA have a significantly higher risk of developing Venous Thromboembolism (VTE), which includes blood clots in the legs (Deep Vein Thrombosis or DVT) or the lungs (Pulmonary Embolism or PE) [11][12]. This risk is highest during active hemolysis or flares [12].

Condition Common Symptoms to Watch For
DVT (Leg Clot) Swelling, pain, or redness in one leg (rarely both) [13].
PE (Lung Clot) Sudden shortness of breath, sharp chest pain when breathing in, or coughing up blood [14].

Because of this risk, your doctor may recommend “thromboprophylaxis”—preventative blood-thinning medication—especially if you are hospitalized or having a flare [12][15].

The Psychological Toll and Quality of Life

AIHA impacts more than just your blood; it affects your energy and mental health [16]. Many patients experience scan anxiety or “lab anxiety,” the stress that builds up before a routine blood draw [3].

  • Fatigue: Even when blood counts are normal, some patients experience lingering fatigue that can be frustrating to manage [9][16].
  • Managing Secondary Conditions: If your AIHA was triggered by another condition like Lupus or CLL, your “remission” depends on managing that underlying trigger as well [9][17].
  • Information Overload: The stress of a diagnosis makes retaining complex subtyping and treatment information difficult. Consider bringing a trusted friend or family member to your appointments, or ask your doctor if you can record the conversation to review later.

Survivorship: Moving Forward

Living well with AIHA involves a shift in perspective. It means becoming an expert in your own symptoms and laboratory trends. While the chronic nature of the disease can feel like “waiting for the other shoe to drop,” many patients live full, active lives by maintaining a close partnership with their hematologist and having a clear action plan for flares [2][3].

Previous: Treatment Pathways | Return to Overview

Common questions in this guide

How do I know if I am having an AIHA flare?
An AIHA flare, or hemolytic crisis, often presents with sudden yellowing of the eyes or skin, dark tea-colored urine, severe breathlessness, and a rapid heartbeat. This is a medical emergency that requires immediate evaluation.
Why do I need to know my baseline lab numbers for AIHA?
Knowing your baseline Hemoglobin and LDH levels when you feel healthy helps you and your doctor detect a flare early. Changes in these numbers can signal active red blood cell destruction before you even feel symptoms.
What is the risk of blood clots with AIHA?
Patients with AIHA have a significantly higher risk of developing blood clots in the legs or lungs, particularly during an active flare. Because of this, doctors often recommend preventative blood-thinning medications.
Does AIHA cause long-term fatigue?
Yes, many patients experience lingering fatigue even when their blood counts are considered normal in remission. Managing your energy levels and communicating with your doctor is an important part of long-term AIHA survivorship.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What are my 'baseline' laboratory numbers (Hemoglobin, LDH) that we should use to define a remission?
  2. 2.How often do I need blood work now that my counts are stable?
  3. 3.What is my specific risk for blood clots, and should I be on any preventative medication (thromboprophylaxis)?
  4. 4.What is our emergency 'flare plan'—at what Hemoglobin level or symptom should I go directly to the hospital?
  5. 5.How do we monitor my underlying condition (e.g., Lupus or CLL) in coordination with my AIHA care?

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

    Warm Autoimmune Hemolytic Anemia.

    Brodsky RA

    The New England journal of medicine 2019; (381(7)):647-654 doi:10.1056/NEJMcp1900554.

    PMID: 31412178
  2. 2

    Survival in autoimmune hemolytic anemia remains poor, results from a nationwide cohort with 37 years of follow-up.

    Hansen DL, Möller S, Frederiksen H

    European journal of haematology 2022; (109(1)):10-20 doi:10.1111/ejh.13764.

    PMID: 35276014
  3. 3

    New Therapies for the Treatment of Warm Autoimmune Hemolytic Anemia.

    Fattizzo B, Barcellini W

    Transfusion medicine reviews 2022; (36(4)):175-180 doi:10.1016/j.tmrv.2022.08.001.

    PMID: 36182620
  4. 4

    Babesiosis-Associated Warm Autoimmune Hemolytic Anemia.

    Santos MA, Tierney LM, Manesh R

    Journal of general internal medicine 2020; (35(3)):928-929 doi:10.1007/s11606-019-05506-5.

    PMID: 31713032
  5. 5

    Rapidly Progressing Autoimmune Hemolytic Anemia in a Pediatric Patient With COVID-19.

    Kononowicz JE, Farhan Ali M, Palko W, et al.

    Cureus 2023; (15(9)):e45633 doi:10.7759/cureus.45633.

    PMID: 37868512
  6. 6

    Systemic Lupus Erythematosus and Antiphospholipid Syndrome Accompanied by Mixed-Type Autoimmune Hemolytic Anemia.

    Suzuki E, Kanno T, Saito Y, Shimbo T

    Case reports in rheumatology 2023; (2023()):4963196 doi:10.1155/2023/4963196.

    PMID: 37766758
  7. 7

    A case of autoimmune hemolytic anemia with cold agglutinin disease post-operation for recurrent ovarian cancer.

    Sugimoto A, Yamada H, Tasaki K, et al.

    International cancer conference journal 2025; (14(3)):235-240 doi:10.1007/s13691-025-00758-x.

    PMID: 40625772
  8. 8

    A Rare Case of Cold Antibody-Mediated Autoimmune Haemolytic Anaemia in Early Systemic Lupus Erythematosus.

    Rajaram H, Ganegoda S, Andev R

    Cureus 2025; (17(6)):e86842 doi:10.7759/cureus.86842.

    PMID: 40718204
  9. 9

    Autoimmune haemolytic anaemias.

    Michel M, Crickx E, Fattizzo B, Barcellini W

    Nature reviews. Disease primers 2024; (10(1)):82 doi:10.1038/s41572-024-00566-2.

    PMID: 39487134
  10. 10

    Autoimmune hemolytic anemia in COVID-19 patients: A systematic review of 105 cases on clinical characteristics and outcomes.

    Ayyad M, Abu Alya W, Barabrah AM, et al.

    Clinical immunology (Orlando, Fla.) 2025; (277()):110512 doi:10.1016/j.clim.2025.110512.

    PMID: 40348041
  11. 11

    Autoimmune hemolytic anemia and venous thromboembolism: A systematic review and meta-analysis.

    Ungprasert P, Tanratana P, Srivali N

    Thrombosis research 2015; (136(5)):1013-7.

    PMID: 26359320
  12. 12

    Autoimmune Hemolytic Anemia and Pulmonary Embolism: An Association to Consider.

    Solari D, Alberio L, Ribi C, et al.

    TH open : companion journal to thrombosis and haemostasis 2021; (5(1)):e8-e13 doi:10.1055/s-0040-1721733.

    PMID: 33469565
  13. 13

    Multiple Facets of Venous Thrombosis.

    Brill A

    International journal of molecular sciences 2021; (22(8)) doi:10.3390/ijms22083853.

    PMID: 33917767
  14. 14

    Venous thrombosis.

    Wolberg AS, Rosendaal FR, Weitz JI, et al.

    Nature reviews. Disease primers 2015; (1()):15006 doi:10.1038/nrdp.2015.6.

    PMID: 27189130
  15. 15

    [Thrombotic risk in autoimmune hemolytic anemia].

    Ueda Y

    [Rinsho ketsueki] The Japanese journal of clinical hematology 2022; (63(6)):608-617 doi:10.11406/rinketsu.63.608.

    PMID: 35831195
  16. 16

    [Advances in understanding the pathogenesis and treatment of autoimmune hemolytic anemia].

    Ueda Y

    [Rinsho ketsueki] The Japanese journal of clinical hematology 2022; (63(9)):1014-1025 doi:10.11406/rinketsu.63.1014.

    PMID: 36198524
  17. 17

    Complement-mediated hemolysis persists year round in patients with cold agglutinin disease.

    Röth A, Fryzek J, Jiang X, et al.

    Transfusion 2022; (62(1)):51-59 doi:10.1111/trf.16745.

    PMID: 34813663

This page provides educational information about living with AIHA and its potential complications. Always consult your hematologist for medical advice and to establish your specific flare plan.

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