After the recent tragic loss of a 3 year old girl whose liver failed after an infection with Respiratory syncytial virus (RSV), we are asking the question about when chelation should be stopped. In this case, Exjade was not ceased. We do not know if it was a factor in liver failure, but as the possibility is there, I contacted the Cooley's Anemia Foundation, requesting that they ask one of our Centers of Excellence for advise on what to do. Chelation should be stopped when fever is present.
Dr. Ellis Neufeld from Boston Children's gives us this advice.
Cooleys Anemia
January 12 at 1:01pm ·
The recent tragic passing of a young thalassemia patient has affected many people in the thalassemia community, and understandably. This has prompted some discussion as to whether an interaction with chelation medication may have had an effect in this case. Whether this may have been a possibility in this particular case is something that is impossible to say at this point; there are many factors which need to be considered and looked at. However, we would like to offer this advice from our Medical Advisory Board Chair, Dr. Ellis Neufeld, concerning some situations in which one may need to consider temporarily halting chelation therapy while treating another issue:
1. As a general rule, patients should always halt chelators (any chelator) temporarily for fever, and call their chelator prescriber or on call doctor to report the fever, at any hour of the day or night.
a. Patients whose spleen has been removed must also be seen promptly for fever over 101.5F (38.5C) because of the higher risk of bacterial infection.
b. Patients on Ferriprox (deferiprone) with fever must not only temporarily halt chelator, but also go promptly for blood counts, because of the small but important risk of neutropenia (low levels of neutrophils) with Ferriprox.
2. Patients with any significant, new clinical events, even without a fever, should halt their chelator until they talk to their provider. Examples of such events might include changes in vision or hearing, significant vomiting or diarrhea which is new or severe (as opposed to chronic and/or mild), lethargy, respiratory distress, worse jaundice, abdominal pain, joint pain and so on. Chelators are less likely to cause some findings on this list than others, but it never hurts to call.
3. In general, a “sniffle” or obvious cold virus without fever, or vomiting once or twice in a child, or mild loose stools, would not require stopping chelator if no fever is present. Parents should have a reliable fever thermometer available for monitoring.
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