Almost all people with myelodysplastic syndromes (MDS) get anemia, or low red blood cell levels, as a result of MDS. “Anemia is almost universal in MDS,” wrote Dr. David Steensma of the Dana-Farber Cancer Institute in an e-mail to the MDS Beacon.

In MDS, the bone marrow produces reduced amounts of mature blood cells of all types, including red blood cells, so people with MDS are especially at risk for anemia.

Red blood cells are often the first to be affected by MDS. At the time of their diagnosis, more than half of people with MDS have anemia that requires blood transfusions. Others “go several years” before they develop anemia, wrote Dr. Steensma.

Overall, “about 90 percent of patients will have anemia during the course of disease and most will require [blood] transfusions at some point,” wrote Dr. Esther Oliva, who has published research on MDS in Leukemia & Lymphoma and other journals, in an e-mail to the Beacon.

Symptoms

Anemia can lead to symptoms that can have a major impact on MDS patients’ daily lives. People with MDS and anemia often experience chronic tiredness, chest pain, headaches, problems concentrating, shortness of breath, fast or irregular heartbeat, pale skin, chilled sensations, cold hands and feet, and dizziness. Patients may feel the effects of anemia intensify when standing or after exercise.

The tiredness may be especially troublesome. “Patients with MDS often experience profound fatigue.  Anemia exacerbates that fatigue, though the fatigue can be quite problematic even in people with only mild anemia,” wrote Dr. Steensma.

“Low energy levels and frequent hospital visits can even impair patients’ social lives,” added Dr. Oliva.

Untreated, anemia may lead to nerve damage and decreased mental capacity. The heart may also become overworked as it rapidly pumps blood to compensate for the lack of sufficient oxygen-carrying red blood cells, which may cause heart problems or heart failure. Severe cases of anemia can lead to death.

Risk Factors

MDS patients who are most at risk for anemia have certain other conditions, including inflammatory disorders, kidney impairment, or vitamin B12 and folate deficiency. Certain medications, including aspirin, ibuprofen, anticonvulsant drugs, and certain drugs used to treat HIV or hypertension, can also increase the risk for anemia.

People with higher-risk MDS are more likely to need blood transfusions for their anemia than people with lower-risk MDS. About 40 percent of people with low-risk MDS receive blood transfusions for anemia, while 80 percent of people with high-risk MDS do. People who have had MDS for longer may also be more likely to need transfusions.

Diagnosis

To diagnose anemia, doctors take patients’ medical histories, perform a physical exam, and draw blood samples to perform a complete blood count. A complete blood count measures the levels of red blood cells and hemoglobin, the oxygen-carrying protein found in red blood cells. Doctors examine the shape, size, and color of the red blood cells, to determine the underlying cause of the anemia.

A doctor may also find a patient’s anemia from the bone marrow exam used to diagnose MDS.

When found, anemia is classified as mild, moderate, or severe, depending on how much hemoglobin there is in the patient’s blood. People with mild anemia may not feel any symptoms. People with moderate anemia feel symptoms, and people with severe anemia are treated right away, as severe anemia can be lethal.

Treatment

Severe anemia in MDS patients is most commonly treated with red blood cell transfusions, which are done in a hospital or clinic. During a transfusion, the patient receives donated red blood cells through a tube connected to a needle inserted in the patient’s vein. A transfusion takes two to three hours per unit of blood, according to the National Marrow Donor Program. Transfusions provide relief from anemia symptoms within 24 hours, but the effects are short-lived, sometimes lasting less than a week.

Treatments for MDS can also help with anemia by stimulating blood cells to mature. Studies show the drug Vidaza (azacitidine) decreases the need for blood transfusions, and Revlimid (lenalidomide) can eliminate the need for transfusions in people with MDS. Melphalan and Ara-C (cytosine arabinoside) eliminate abnormal, immature red blood cells. However, Dacogen (decitabine) has been shown to decrease red blood cell counts.

For less severe anemia or to prevent the condition altogether, people with MDS often take drugs called erythropoietin (EPO) and granulocyte colony-stimulating factor (G-CSF). EPO and G-CSF increase blood cell production. EPO usually provides relief within six to eight weeks and works best for people who do not require frequent transfusions or do not require transfusions at all. With G-CSF, “the earlier the treatment is initiated, the faster the response,” wrote Dr. Oliva.

Complications of Treatment

Frequent red blood cell transfusions may cause the body to store excess iron from hemoglobin. Excess iron is often treated with chelation therapy drugs, which bind and remove iron from the body. Treatment for excess iron is not standardized, however.  “There is controversy among MDS experts about just how common or important iron overload is, and about which patients might benefit from chelation therapy,” Dr. Steensma wrote.

For more information on excess iron in MDS, please see the related Beacon resource article.

Prognosis

Research has consistently shown that MDS patients who are not dependent on red blood cell transfusion have longer overall survival than those who need regular transfusions.  One of the factors that contribute to decreased overall survival in patients who receive repeated transfusions is excess iron build-up that can reach potentially toxic levels.

Take-Home Strategies

“There is little that patients can do at home,” said Dr. Steensma. Dr. Oliva wrote patients “must follow a balanced diet, take vitamins and have iron storage evaluation monitored.”

Anemia is a major and often disruptive facet of MDS. However, doctors have several different ways of fighting the “almost universal” anemia in people with MDS, with different options available for patients’ specific conditions.