8 Things to Know About Myelofibrosis

Doctor William C Lloyd Healthgrades Medical Reviewer
Medically Reviewed By William C. Lloyd III, MD, FACS
Written By Elizabeth Hanes, RN on November 21, 2022
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    Myelofibrosis is uncommon, but potentially deadly if left untreated.
    Normally, your bone marrow produces all kinds of blood cells. Myelofibrosis (MF) disrupts this process and causes the marrow to produce scar tissue instead of vital cells. When the number of circulating red and white blood cells falls, the body lacks oxygenation and is left vulnerable to infection. MF also can cause your spleen and liver to become enlarged. Luckily, myelofibrosis can be treated. Discover 8 other fascinating facts about this rare blood disorder.
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    1. Myelofibrosis is a rare disease.
    According to the Genetic and Rare Diseases (GARD) Information Center, the incidence of myelofibrosis is difficult to pin down. Researchers estimate about one in 100,000 people in North America, Europe and Australia get this disease. The MPN Research Foundation estimates there are about 18,000 people in the U.S. currently living with MF. Despite the condition’s rarity, researchers are pursuing investigations to better understand what causes the disease and how it can be effectively treated.
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    2. Myelofibrosis has many names.
    Myelofibrosis might be called “primary myelofibrosis,” “chronic idiopathic myelofibrosis,” “osteomyelofibrosis” or “Agnogenic myeloid metaplasia.” Each of these terms refers to the same bone marrow disorder, in which the marrow becomes scarred and stops making blood cells. When myelofibrosis occurs without an underlying cause, doctors label it “primary” myelofibrosis. When a related disorder like polycythemia vera (PV) causes myelofibrosis, it is called “secondary” myelofibrosis. No matter what you call it, MF is a chronic condition that requires ongoing medical management.
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    3. Myelofibrosis is considered a cancer.
    Often people use the word cancer to describe the rapid growth of aggressive, mutated cells that form tumors. Myelofibrosis does not exactly fit this definition because the condition refers to scarring of bone tissue. However, since MF also results in the production of misshapen or immature blood cells, it is considered a type of cancer. Specifically, MF falls under the umbrella of “chronic myeloproliferative neoplasms,” which is a group of bone marrow cancers that involve the over-production of a particular type of blood cell.
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    4. Myelofibrosis affects older people more often than youngsters.
    While myelofibrosis can develop in anyone at any age, it’s most common in men and women over age 60. Other risk factors for developing the condition include the gene mutations JAK2 and CALR; long-term exposure to petroleum-based chemicals like toluene; extended exposure to ionizing radiation like the kind associated with X-ray machines; and underlying conditions like polycythemia vera, leukemia, lymphoma or another type of blood cancer that causes the bone marrow to make abnormally shaped or immature cells.
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    5. Myelofibrosis symptoms can be subtle.
    Sometimes people with myelofibrosis experience no symptoms for many years. Other times, the disorder may progress rapidly and cause you to feel generally unwell. Because MF causes the liver and spleen to devote more resources to blood cell production and filtering, those organs may become enlarged and cause pain or a bloated feeling in the abdomen. Other symptoms of myelofibrosis include frequent infections (due to a low white cell count) and excessive bleeding (due to reduced platelet counts).
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    6. Myelofibrosis can make you feel weak and sweaty.
    Because myelofibrosis often leads to anemia (lack of oxygen in the blood), the condition can make you feel weak and listless. It also can cause night sweats, itchy skin, weight loss, fevers and joint pain. Occasionally myelofibrosis (or the underlying disease causing it) can bring on an attack of gout, which is a type of painful arthritis that usually affects the big toe. Treating MF includes managing all of the various symptoms the disorder can cause.
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    7. Myelofibrosis can be treated.
    Treatments for MF include medications and medical procedures. The drug ruxolitinib often is used when a JAK2 gene mutation causes the condition. Other treatments for myelofibrosis include a medication called hydroxyurea, radiation therapy and stem cell transplantation. A drug called interferon-alpha can reduce the size of an enlarged spleen or liver caused by myelofibrosis. Researchers are currently studying a number of other drugs that might be approved for treatment of myelofibrosis in the future.
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    8. You can live well with myelofibrosis.
    Although myelofibrosis is a complex, chronic condition, you can live well with it. Work with your doctors to develop a treatment plan that meets your medical and lifestyle goals. Be sure to follow the plan carefully. Make any required lifestyle adjustments, such as managing your energy levels, eating healthy and getting moderate amounts of exercise. By partnering with your medical team, you can continue to live a robust life even with myelofibrosis.
8 Things to Know About Myelofibrosis
  1. Primary Myelofibrosis (PMF). MPN Research Foundation. http://www.mpnresearchfoundation.org/Primary-Myelofibrosis
  2. Myelofibrosis. MedlinePlus. https://medlineplus.gov/ency/article/000531.htm
  3. Myelofibrosis. Genetic and Rare Diseases Information Center. https://rarediseases.info.nih.gov/gard/8618/myelofibrosis/resources/1
  4. Myelofibrosis. Merck Manuals. https://www.merckmanuals.com/home/blood-disorders/myeloproliferative-disorders/myelofibrosis
  5. Understanding Myelodysplastic Syndromes (MDS). MDS Foundation. http://www.mds-foundation.org/what-is-mds/
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Last Review Date: 2022 Nov 21
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