Iron overload

[maggiemag]

Hi everyone! I was just diagnosed with cardiac and liver iron overload, despite having had only about 10 transfusions, and a ferritin of only 550 or so. I had a cardiac MRI, which apparently is the gold standard. I already have significant CHF; ICD as well, so it is concerning. I know it is very unusual with a ferritin that low. They do want to treat me with a chelating agent, I forget which drug. I think it has significant GI side effects. They are sending me to some sub specialist cardiologist. So I was hoping some of you kind folk out there could share your experience. Thanks in advance.
Margaret

[Neil Cuadra]

Margaret,

It's too bad that you'll need chelation, but it's so important to protect your heart and liver.

Do you know if the drug is Desferal (deferoxamine) or Exjade (deferasirox) or Jadenu (deferasirox)? Those are the usual choices in the U.S.

[Marlene]

Hi Margaret,

Sorry to hear you need chelation. John did deferral and once the oral was available, he switched to Exjade. Both caused some digestive issues, mostly nausea. When he started Exjade, they started him on a lower dose and increased it over time in an attempt to get to a full dose. He was never able to tolerate a full dose and even at a lower dose, he would have take a break from the drug due to side effects. For many, one break and restart of the drug was helpful in resolving side effect issues meaning once they restarted the drug, they tolerated it well.

That being said, it was not surprising for John to experience nausea. All the meds during his treatment appeared to cause some level of nausea. The good thing is that you can start at a lower dose and work up to what you can tolerate. Make sure they keep an eye on your kidney and liver function throughout your treatment with the chelator. Eventually John had to stop because of elevated creatinine levels. At this point though, his HGB was above 10 and they authorized therapeutic phlebotomies to further reduce iron. They would take 250 ml every other month. Depending on where your red cells are, you may be able to do the same as long as you can make them up without over stressing your bone marrow. Also, you don't want to put extra strain on your heart with a too low HGB.

Hope this helps.

Marlene