Many people with polycythemia vera (PV) first notice subtle, general symptoms that build slowly over weeks to months. The most common early complaints are fatigue, headache, dizziness, blurred vision, ringing in the ears (tinnitus), and sometimes shortness of breath on exertion, symptoms that often prompt a first blood test. Clinical reviews emphasize that these signs are nonspecific (they occur in many conditions). [1][2][3]

PV may also cause a few characteristic, more specific symptoms that help clinicians distinguish it from other causes of tiredness. Two particularly notable features are:

• Aquagenic pruritus (intense itching after warm baths or showers)
• Erythromelalgia (characterized by burning pain, redness, and warmth in the hands or feet)

Patients may describe flushing or a persistent feeling of warmth, and some develop facial redness. These symptoms can be highly bothersome and often respond to PV-directed care (for example, phlebotomy, cytoreduction, or symptom-directed treatments), so identifying them early helps prioritize therapy and improve quality of life. [3][5]

Itching & aquagenic pruritus

One of the most characteristic, and often most annoying, symptoms of polycythemia vera is aquagenic pruritus: an intense, sometimes burning itch that is triggered or worsened by contact with warm water (showers, baths) and can occur without a visible rash. Patients also commonly report more general symptoms, such as itching or flushing. [3]

The exact cause isn’t fully understood, but contemporary reviews describe it as a disease-related symptom likely driven by the abnormal release of itch-promoting mediators and inflammatory chemicals from blood/immune cells that make skin itch from blood and immune cells in PV, making it part of the disease biology rather than a simple skin problem. Recognizing aquagenic pruritus is essential because it has a significant impact on quality of life. [1][3]

Management begins with simple, practical measures and escalates if symptoms persist. Basic self-care (cooler or shorter showers, gentle moisturizers, avoiding known triggers) plus symptomatic therapy such as oral antihistamines may help many patients. When pruritus is severe or refractory, hematologic management matters:

• Optimizing PV control (phlebotomy, low-dose antiplatelet, or changing/starting cytoreductive therapy)
• Disease-directed agents (JAK inhibitors or interferon therapy)

Work with hematology to tailor treatment when itching significantly impairs sleep, mood, or daily function. [1][3][5]

Hyperviscosity & vascular symptoms

When red blood cell mass increases in PV, the blood becomes thicker, which can cause a cluster of vascular or “hyperviscosity” symptoms. Patients commonly report headaches, blurred or double vision, light-headedness, tinnitus (ringing in the ears), and a general sense of sluggishness or slowed thinking when symptoms flare. These symptoms result from slower blood flow and reduced oxygen delivery to the microcirculation. [1]

Another characteristic vascular symptom is erythromelalgia (burning pain, redness, and warmth in the hands or feet) caused by small-vessel platelet activation; it often improves with low-dose antiplatelet or with PV-directed therapy. Recognizing this set of symptoms helps clinicians decide when to check a CBC, assess for hyperviscosity, and consider rapid measures such as phlebotomy or antiplatelet treatment when indicated. [2][3]

Some vascular symptoms could be red flags that require urgent evaluation, as they may signal thrombosis or severely reduced blood flow, rather than simply increased viscosity. Sudden focal weakness, slurred speech, abrupt severe head/neck pain, sudden vision loss, acute chest pain, or breathlessness may warrant assessment for stroke, myocardial infarction, or pulmonary embolism. [3]

Symptoms such as rapidly progressive limb pain, cyanosis, worsening headaches, or recurrent visual changes should always be discussed with a healthcare provider. Promptly reporting these and any other new or persistent symptoms allows a hematologist to determine if they are serious and to create the most appropriate management plan. Addressing symptoms early is an important part of managing the condition and maintaining quality of life. [1]

Thrombosis

Blood clots are a crucial acute risk in polycythemia vera; they can occur in either venous (deep-vein thrombosis, pulmonary embolism) or arterial (stroke, heart attack) locations. Clues that a clot may be present include sudden limb swelling and/or redness, and pain (DVT), sudden chest pain or breathlessness (PE).

Because clot sites and symptoms vary, it is important to report any abrupt focal symptoms, such as a neurologic deficit, chest pain, acute abdominal pain, or sudden limb symptoms to a healthcare provider. Early recognition is crucial because effective management (including anticoagulation, supportive care, and rapid PV-directed measures) significantly impacts outcomes. [2][3]

Splenomegaly & abdominal symptoms

An enlarged spleen (splenomegaly) is a common and significant feature in PV, often causing abdominal fullness, early satiety, a dull ache or pressure in the left upper abdomen, and sometimes visible abdominal swelling. Clinically detectable splenomegaly is associated with a higher symptom burden and with disease progression (PV changing into a scarred-marrow phase) and differences in outcome, thereby influencing both symptomatic care and long-term planning. Because patients sometimes dismiss mild fullness, actively asking about early satiety and left-side discomfort at visits helps detect clinically meaningful splenomegaly earlier. [4]

To investigate the cause of spleen-related symptoms, your doctor will likely start with a physical exam. If more information is needed to understand your symptoms, they may suggest an imaging test, such as an ultrasound. The main goal of your treatment plan is to manage the underlying polycythemia vera. By working to control the condition, your healthcare team also aims to relieve related symptoms, like those caused by an enlarged spleen. [1]

For patients with significant or painful splenomegaly that does not respond to standard PV therapy, specialist options may be considered in consultation with hematology. Decisions about invasive approaches are rare and made only after multidisciplinary review because of risks and long-term implications. [4][5]

Bleeding, bruising & mucosal symptoms

Although PV is best known for clotting, bleeding can also occur, especially mucosal bleeding such as nosebleeds, gum bleeding, easy bruising, or prolonged bleeding after minor cuts. This happens because platelet numbers and function can be abnormal in PV. [2][3]

Management is pragmatic and individualized. For minor bleeding, local measures (pressure for epistaxis, topical hemostatics, and dental review for gum bleeding) and review of antiplatelet or anticoagulant drugs are crucial. However, decisions about stopping antiplatelet or anticoagulants should be made in consultation with hematology, as these agents also protect against thrombosis. Seek your healthcare provider for profuse bleeding, signs of anemia (lightheadedness, fainting, rapid heartbeat), or any bleeding that won’t stop with basic first aid. [1][2][3]

Fatigue, sleep & mood

Fatigue is one of the most common and impactful symptoms reported by people with polycythemia vera; it limits work, social activity, and overall quality of life. Reviews and symptom surveys show that fatigue often coexists with sleep disturbance, low mood, and cognitive complaints ("brain fog"), creating a cluster that disproportionately affects daily functioning. Because these symptoms are multi-factorial (disease activity, inflammatory cytokines, poor sleep, anemia or iron issues, medication effects, and psychological stress can all contribute), a broad assessment is needed rather than assuming a single cause. Screening for depression/anxiety and asking about sleep quality and daytime sleepiness are practical first steps. [1]

Management combines treating reversible contributors and symptom-directed care. Address sleep disorders (screen for obstructive sleep apnea), review medications that may cause fatigue, check for iron deficiency or anemia where appropriate, and offer practical measures such as graded exercise programs, sleep hygiene, and skills to manage thoughts,sleep and stress. Coordination with hematology to optimize PV control (which, in some patients, reduces symptom burden) plus referral to rehabilitation, sleep medicine, or mental health services when indicated provides the best chance of improving daily functioning. [1][3]

Treatments for polycythemia vera, while essential, can cause their own symptoms, so it’s important to tell your care team about any new problems after starting therapy. The most common PV treatments include phlebotomy (periodic blood removal), low-dose antiplatelet, and cytoreductive drugs. Phlebotomy often gives rapid symptom relief (by lowering hematocrit) but can produce temporary lightheadedness or fatigue right after the procedure; keeping well hydrated and sitting briefly after a session usually prevents most of these effects. [1]

Cytoreductive drugs and disease-directed agents can bring side effects that mimic or add to PV symptoms. Interferon therapy is associated with flu-like symptoms, fatigue, and, in some patients, mood changes. Monitoring and dose adjustment help manage these issues. [6]

Other supportive drugs can cause gastrointestinal upset or bleeding risk, and newer targeted therapies may have distinct adverse-effect profiles that require monitoring. Regular communication between the patient and the hematology team about side effects, early dose adjustments, or switching therapies often helps keep symptoms controlled while preserving the long-term benefits of treatment. [5]

1. What are the most common symptoms of polycythemia vera?

Fatigue, headache, dizziness, blurred vision or tinnitus, itching (often after a hot shower), facial redness, and burning pain in hands/feet (erythromelalgia). These are typical early complaints that may prompt a CBC and clinical review. [1]

2. What causes the awful itching after a hot shower?

Aquagenic pruritus is a PV-linked symptom likely caused by the abnormal release of itch-promoting mediators and inflammation related to the disease; it’s a characteristic clue to an MPN and is often responsive to symptom-directed therapy, along with improved PV control. [1][3]

3. Will treatment relieve my symptoms?

Some symptoms improve when hematocrit and platelet targets are met (such as, phlebotomy, antiplatelet, cytoreductive drugs). Symptom-specific measures (such as, antihistamines for severe pruritus, antiplatelet for erythromelalgia) may also help. Work with hematology to tailor the plan. [1][5]

4. Can PV cause both blood clots and bleeding?

Yes, PV raises the risk of thrombosis. Still, it can also cause mucosal bleeding (such as nosebleeds and gum bleeding) because platelet number and function can be abnormal. Management balances thrombosis prevention and bleeding risk in consultation with the hematology team. [2][3]

5. How do fatigue, sleep problems, and mood fit into PV care?

Fatigue and disturbed sleep are among the most disabling PV symptoms and often coexist with low mood or “brain fog.” Screening for depression and sleep disorders and addressing reversible contributors (sleep apnea, iron issues, medication side effects) may help improve daily function. [1]

6. What are the newest directions in symptom care?

Recent reviews highlight improved symptom measurement, targeted symptom therapies, and the use of interferon therapy in selected patients, all aimed at enhancing quality of life while improving complications. Discuss emerging options with your hematologist.

1. Tremblay, D., Kremyanskaya, M., Mascarenhas, J., & Hoffman, R. (2025). Diagnosis and treatment of polycythemia vera: a review. JAMA. 333(2):153-160.
2. Fox, S., Griffin, L., & Harris, D. R. (2021). Polycythemia vera: rapid evidence review. American family physician, 103(11), 680-687.
3. Tefferi, A., Vannucchi, A. M., & Barbui, T. (2021). Polycythemia vera: historical oversights, diagnostic details, and therapeutic views. Leukemia, 35(12), 3339-3351.
4. Silver, R. T., Erdos, K., Taylor III, E., Scandura, J. M., & Abu-Zeinah, G. (2023). Splenomegaly (SPML) in polycythemia vera (PV): its clinical significance and its relation to symptoms, post-polycythemic myelofibrosis (PPMF) and survival. Leukemia, 37(3), 691-694.
5. Benevolo, G., Vassallo, F., Urbino, I., & Giai, V. (2021). Polycythemia vera (PV): update on emerging treatment options. Therapeutics and clinical risk management, 209-221.
6. Gisslinger H, Klade C, Georgiev P, Krochmalczyk D, Gercheva-Kyuchukova L, Egyed M, Rossiev V, Dulicek P, Illes A, Pylypenko H, Sivcheva L, Mayer J, Yablokova V, Krejcy K, Grohmann-Izay B, Hasselbalch HC, Kralovics R, Kiladjian JJ; PROUD-PV Study Group. (2020). Ropeginterferon alfa-2b versus standard therapy for polycythaemia vera (PROUD-PV and CONTINUATION-PV): a randomised, non-inferiority, phase 3 trial and its extension study. Lancet Haematol. 7(3):e196-e208.