Aplastic Anemia & MDS International Foundation, Inc.
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Iron Overload


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  Iron Overload Due to Blood Transfusions
  Fluctuating Ferritin Levels
  More Precise Tests for Iron Overload
  Discontinuing Desferal Therapy
  Taking Vitamin C with Desferal or Exjade
  Nausea Associated With Desferal
  Desferal or Exjade Affecting Eyesight
  SQUID Machine
  Chelating Other Metals
  Cardiac Monitoring During Chelation Therapy


Iron Overload Due to Blood Transfusions

Once a person exceeds a ferritin level of 1,000, how many years does it take for most patients who do not chelate to suffer major organ damage because of the overload?  At what age would it be impractical from a quality of life and longevity standpoint to start an MDS patient on Desferal? Are bolus injections of Desferal comparable to subcutaneous infusion regarding the amount of iron excreted?

The time it takes for patients to develop symptoms of iron overload is variable. In patients with thalassemias, symptoms arise by 15-20 years of age. Biochemical evidence of damage occurs earlier.

The decision to start chelation therapy with

Deferoxamine (Desferal) is an iron chelator, approved by the U.S. Food and Drug Administration (FDA) to remove excess iron from the body. Deferoxamine combines with iron in the bloodstream and is removed from the body by the kidneys. Aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH) patients are at risk for developing iron overload if they become dependent on blood transfusions.
Desferal (deferoxamine) or
Deferasirox is an iron chelator. Iron chelators are medicines that are used to remove excess iron from the body. Iron build-up occurs in patients who become dependent on blood transfusions. Deferasirox combines with the iron stores in the body and is removed by the kidneys.
Exjade
(ILC 670)would depend upon the individual's overall physical condition, the presence of other illnesses and the severity of the MDS. In older individuals with other medical conditions or a rapidly progressing MDS, chelation would probably not be very beneficial.


Fluctuating Ferritin Levels

If during the course of Desferal treatment, ferritin levels initially decrease and then begin to rise again should the level of Desferal be increased?

The decision about whether to change the

Deferoxamine (Desferal) is an iron chelator, approved by the U.S. Food and Drug Administration (FDA) to remove excess iron from the body. Deferoxamine combines with iron in the bloodstream and is removed from the body by the kidneys. Aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH) patients are at risk for developing iron overload if they become dependent on blood transfusions.
Desferal (deferoxamine) dose would really need to be based on an overall assessment of the patient's physiological state, because there may be other factors that would cause a hematologist to limit the amount of Desferal being administered. Typically, physicians would want to comprehensively evaluate whether there was any contraindication to increasing the Desferal dose a little to see if the ferritin levels could be brought down into the 1500 to 2000 range or even maybe a little bit lower. It is very much dependent on a comprehensive evaluation of the overall physiological state of the patient and whether there are reasons not to increase the dosage.


More Precise Tests for  Iron Overload

Is there a more specific test for determining iron overload than measuring serum ferritin level or transferrin saturation? Could Procrit/Epogen cause an increase in serum ferritin level and indicate a 'false-positive' reading?

The most direct method for assessing iron overload is a liver biopsy. However, this is an invasive procedure and not many patients are eager to have this done. There are radiologic ways of estimating body iron load but the experts disagree on the accuracy of these methods. In the absence of other complicating problems, serum ferritin is a reasonable approximation of the body's iron status. Serum ferritin levels can be falsely elevated when an infectious or inflammatory condition is present. Ferritin levels can be elevated in individuals who have a hereditary propensity to develop iron overload (hereditary hemochromatosis). This possibility can be evaluated by sending blood for HFE gene mutation analysis. Erythropoietin should NOT cause a rise in serum ferritin sufficient to confuse interpretation of serum ferritin levels.


Discontinuing Desferal Therapy

How does the doctor decide when the patient on iron chelation therapy (Desferal or Exjade) no longer needs further treatment for transfusional iron overload? What ferritin level needs to be reached?

If the patient is continuing to require

The oxygen carrying cells in our body. These bring oxygen to our tissues, and are the most numerous of the blood cells.
red blood cells, one would probably need to continue indefinitely. If the patient responds to therapy and no longer requires red cells, the risk of side effects from
Deferoxamine (Desferal) is an iron chelator, approved by the U.S. Food and Drug Administration (FDA) to remove excess iron from the body. Deferoxamine combines with iron in the bloodstream and is removed from the body by the kidneys. Aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH) patients are at risk for developing iron overload if they become dependent on blood transfusions.
Desferal
or
Deferasirox is an iron chelator. Iron chelators are medicines that are used to remove excess iron from the body. Iron build-up occurs in patients who become dependent on blood transfusions. Deferasirox combines with the iron stores in the body and is removed by the kidneys.
Exjade
, especially retinal (vision part of the eye) and nerve damage is increased when the ferritin is less than 800. That might be a reasonable time to stop if there are no ongoing transfusion requirements.


Taking Vitamin C with Desferal

Should Vitamin C be given along with Desferal or Exjade?

Patients with iron overload may become vitamin C deficient, probably because iron oxidizes the vitamin. Having adequate stores of vitamin C is important for optimal iron chelation (removal of excess iron). Vitamin C increases the availability of iron, and so may increase its toxicity if large doses are taken without simultaneous

Deferoxamine (Desferal) is an iron chelator, approved by the U.S. Food and Drug Administration (FDA) to remove excess iron from the body. Deferoxamine combines with iron in the bloodstream and is removed from the body by the kidneys. Aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH) patients are at risk for developing iron overload if they become dependent on blood transfusions.
Desferal infusion or
Deferasirox is an iron chelator. Iron chelators are medicines that are used to remove excess iron from the body. Iron build-up occurs in patients who become dependent on blood transfusions. Deferasirox combines with the iron stores in the body and is removed by the kidneys.
Exjade
. However, there is controversy surrounding the use of vitamin C in patients with iron overload. Some physicians argue against supplemental vitamin C as possibly leading to increased iron damage; while other physicians feel that vitamin C with Desferal or Exjade can be helpful. Vitamin C should not be given to patients with cardiac failure. Discuss your specific nutritional needs with your doctor and take vitamin C ONLY as prescribed by your doctor.


Nausea Associated With Desferal

Is severe nausea a side effect of Desferal therapy? What can be done to combat nausea?

Severe nausea can occur with

Deferoxamine (Desferal) is an iron chelator, approved by the U.S. Food and Drug Administration (FDA) to remove excess iron from the body. Deferoxamine combines with iron in the bloodstream and is removed from the body by the kidneys. Aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH) patients are at risk for developing iron overload if they become dependent on blood transfusions.
Desferal (deferoxamine). This is usually seen where patients are receiving an IV bolus, or where they are receiving a high dose, or with a lowering of the total body iron over-load, the dose of Desferal needs to be adjusted (decreased).
Nausea caused by Desferal can be managed by increasing the time of infusion (up to 12 or 24 hours/day) or, if that doesn't work, by decreasing the dose. A change in the timing of the injection (for example at pre-bedtime) might be useful or antiemetics may be tried. Consult your doctor if you are experiencing severe nausea to determine the best course of action for you.


Desferal or Exjade Affecting Eyesight

Does Desferal or Exjade affect eyesight?

Generally, when

Deferoxamine (Desferal) is an iron chelator, approved by the U.S. Food and Drug Administration (FDA) to remove excess iron from the body. Deferoxamine combines with iron in the bloodstream and is removed from the body by the kidneys. Aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH) patients are at risk for developing iron overload if they become dependent on blood transfusions.
Desferal or
Deferasirox is an iron chelator. Iron chelators are medicines that are used to remove excess iron from the body. Iron build-up occurs in patients who become dependent on blood transfusions. Deferasirox combines with the iron stores in the body and is removed by the kidneys.
Exjade
 are given under controlled conditions and the dose is regulated according to the patient's iron load, there should be no particular problems related to eyesight. However, if Desferal or Exjade are given over a long time-period and the dose is not regulated carefully, there can be problems with loss of night vision, which is only partially reversible.


SQUID Machine

Which medical facilities in the United States have SQUID machines to test iron in the liver?

SQUID, or Superconduction Quantum Interference Device, is a non-invasive approach to measuring liver iron concentration that can occur from transfusional iron overload.  There are at present 4 SQUID instruments in the world.  Two are located in Europe - Hamburg, Germany and Torino, Italy -  and two are in the United States – Columbia Presbyterian Hospital in New York City and Children's hospital in Oakland, California.  


Chelating Other Metals

If the standard iron-chelating agents are used to lower iron, will they also lower other metals such as copper and zinc?

Deferoxamine (Desferal) is an iron chelator, approved by the U.S. Food and Drug Administration (FDA) to remove excess iron from the body. Deferoxamine combines with iron in the bloodstream and is removed from the body by the kidneys. Aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH) patients are at risk for developing iron overload if they become dependent on blood transfusions.
Deferoxamine (Desferal) chelates other metals including aluminum. This is not usually clinically significant.


Cardiac Monitoring During Chelation Therapy

Is cardiac monitoring recommended for AA/MDS/PNH patients who are transfusion dependent and on Desferal or Exjade?

Cardiac monitoring is recommended for patients with iron overload from any cause. See recent news item on www.biospace.com.


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