Acquired secondary polycythemia

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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

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

2 available

Vonjo

PACRITINIB· Sobi, Inc.Accelerated Approval

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

FEDRATINIB HYDROCHLORIDE· Celgene Corporation■ Boxed Warning

indicated for the treatment of adult patients with intermediate-2 or high-risk secondary (post-polycythemia vera) myelofibrosis (MF)

No actively recruiting trials found for Acquired secondary polycythemia at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Acquired secondary polycythemia community →

No specialists are currently listed for Acquired secondary polycythemia.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

1 resources
Vonjo(PACRITINIB)Sobi, Inc.

Travel Grants

No travel grants are currently matched to Acquired secondary polycythemia.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Acquired secondary polycythemia

3 articles
NewsFDA
FDA Approves VONJO
VONJO (PACRITINIB CITRATE) received FDA approval.
NewsFDA
FDA Approves INREBIC
INREBIC (FEDRATINIB HYDROCHLORIDE) received FDA approval.
NewsFDA
FDA Approves OJJAARA
OJJAARA (MOMELOTINIB DIHYDROCHLORIDE) received FDA approval.
See all news about Acquired secondary polycythemia

Caregiver 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.