Overview
Acquired secondary polycythemia is a condition in which your body makes too many red blood cells in response to an outside trigger, rather than because of a problem in the bone marrow itself. Unlike primary polycythemia (polycythemia vera), which is caused by a bone marrow disorder, secondary polycythemia happens because something else in your body or environment is driving the overproduction of red blood cells. The most common triggers include chronic low oxygen levels (from lung disease, sleep apnea, heart disease, or living at high altitude), certain kidney conditions, hormone-producing tumors, or long-term use of testosterone or erythropoietin. The word 'acquired' means you were not born with this condition — it developed later in life due to an identifiable cause. When you have too many red blood cells, your blood becomes thicker than normal. This can slow blood flow and raise the risk of blood clots, stroke, and heart attack. Common symptoms include headaches, dizziness, blurred vision, redness of the skin (especially the face), fatigue, and itching. Some people also experience shortness of breath, high blood pressure, or a feeling of fullness in the abdomen. Treatment focuses on identifying and addressing the underlying cause. For example, if sleep apnea is the trigger, using a CPAP machine at night may bring red blood cell counts back to normal. If a medication like testosterone is responsible, adjusting or stopping the drug may help. In some cases, therapeutic phlebotomy (removing blood) is used to quickly lower red blood cell levels and reduce the risk of clotting. With proper management of the underlying condition, many people see significant improvement.
Also known as:
Key symptoms:
HeadachesDizziness or lightheadednessBlurred or double visionRedness of the face and skinFatigue or feeling unusually tiredItching, especially after a warm bath or showerShortness of breathHigh blood pressureTingling or numbness in hands and feetFeeling of fullness or pressure in the upper abdomenExcessive sweatingJoint painDifficulty concentrating or mental fogginessNosebleeds or easy bruising
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
2 availableVonjo
indicated for the treatment of adults with intermediate or high-risk secondary (post-polycythemia vera) myelofibrosis (MF) with a platelet count below 50 × 10 9 /L
Inrebic
indicated for the treatment of adult patients with intermediate-2 or high-risk secondary (post-polycythemia vera) myelofibrosis (MF)
Clinical Trials
View all trials with filters →No actively recruiting trials found for Acquired secondary polycythemia at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Acquired secondary polycythemia.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Acquired secondary polycythemia.
Community
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Start the conversation →Latest news about Acquired secondary polycythemia
3 articlesCaregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the underlying cause of my secondary polycythemia, and can it be fully treated?,How often will I need blood tests to monitor my red blood cell levels?,Will I need regular phlebotomy, and if so, how often?,Should I take low-dose aspirin or any other medication to reduce my clotting risk?,Are there lifestyle changes — like hydration, exercise, or diet — that can help manage my condition?,What warning signs should prompt me to seek emergency care?,Could any of my current medications be contributing to this condition?
Common questions about Acquired secondary polycythemia
What is Acquired secondary polycythemia?
Acquired secondary polycythemia is a condition in which your body makes too many red blood cells in response to an outside trigger, rather than because of a problem in the bone marrow itself. Unlike primary polycythemia (polycythemia vera), which is caused by a bone marrow disorder, secondary polycythemia happens because something else in your body or environment is driving the overproduction of red blood cells. The most common triggers include chronic low oxygen levels (from lung disease, sleep apnea, heart disease, or living at high altitude), certain kidney conditions, hormone-producing tum
How is Acquired secondary polycythemia inherited?
Acquired secondary polycythemia follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Acquired secondary polycythemia typically begin?
Typical onset of Acquired secondary polycythemia is adult. Age of onset can vary across affected individuals.
What treatment and support options exist for Acquired secondary polycythemia?
2 patient support programs are currently tracked on UniteRare for Acquired secondary polycythemia. See the treatments and support programs sections for copay assistance, eligibility, and contact details.