[Marlene]

Hi LeAnn,

I can certainly understand your concerns on Exjade with having just one kidney. I don't recall anyone in your exact situation and all I can offer is the what John experienced and how we dealt with some of it.

Even though John had both kidneys, they got pretty compromised from his treatment. The anti-fungal and antibiotics took a toll on his kidneys and liver. He also had a very high iron level from numerous transfusions which also takes a toll on your organs. So he really had to watch how his kidneys handled the Exjade.

Exjade was very difficult on him. He could never tolerate a full dose and would have to stop every three weeks and take a break. He would get so nauseated by the 3rd or 4th week. Many times, with the iron chelators, side effects are dose dependent and just by reducing the dose, they clear up. So before beginning any iron chelation therapy, John would get his baseline blood test for liver and kidney function and eye & hearing exam. From there, he would start on a lower than normal dose for his body weight. He would stay on that for one month, get his blood work checked and the up the dose until he got to his tolerable dose.

He was able to be on the Exjade for quite a while without it impacting his creatinine levels. But eventually, we saw his creatinine start to creep up. When this happened, he would take a break until it normalized and then start back up. But we saw that his kidneys were not happy with Exjade for much longer. Even after reducing the dose. Luckily, his HGB got high enough that he was able to stop it and start therapeutic phlebotomies.

In your case, I would consider starting on a low dose to see how you do. Maybe monitor your blood work weekly for the first month then monthly after that. You may not be able to reduce the iron but instead keep it rom rising. If I recall, they usually don't consider starting chelation until your FE is at or above 1000 for two or three test results. But that may be old thinking.

Marlene