[Marlene]

Do you have external lumens on your port or is port subcutaneous?

John did desferal via his hickman the first time until it was pulled for infection. After that, he did sub-q and it was pretty troublesome in that he really got some huge bruises on his belly. He had to stick himself every night and you never knew you hit a small vein until he pulled needle. So he preferred doing it through his port.

Desferal is most effective when infused slowly over an 8 - 10 hour period each day. And then for at least three days in a row. I would say that would be the minimum amount to be effective. You can do desferal 24/7. We knew another SAA patient who did with no problems but he was transfusion dependent for quite a few years and really needed to keep on top things. What's good for you is that you no longer need red cells and have some room to play with your dosage and frequency until you find the mix for you. For John, he infused 5 days in a row for 8 hours each night. Since he had external lumens for his port, I would administer the desferal and flush his ports in the morning. Like the Exjade, he never got to full dose. And after about three weeks, nausea would become a problem so he would take one week off until it settled down.

Prior to starting desferal, he had his hearing and eyes checked to get a baseline. And his first infusion was started at the doctors office to make sure he had no severe adverse reaction. We had to have home healthcare come out to teach this process and they would then send supplies and meds each week. Desferral, once mixed, doesn't have a long shelf life. They provided us with five, single dose, premixed syringes for the pump each week. So the pump comes programed and has case so you can carry it around with you. They can do one syringe for multiple doses if you are not going to be changing it yourself. We went with single dose because we did not want to re-use anything since his white cells were still low.

With your history with Exjade, I would suggest you ask your doctor to start you off with lower dose to see how you tolerate it. Like I said, John never got to full dose and had to interrupt the therapy because of side effects. You really need to tailor it for your body so don't end up with the severe GI disturbances again. While on desferal, John took vitamin E and after one month, started low dose vitamin C (250 mg). Vitamin E to counter the effects of iron and the vitamin C make the iron more available for chelation.

Deferal will make your urine orange since the primary exit route for it is the kidneys. Be sure to do chem panels to keep an eye on your kidney and liver function.

I will have to look to see if I kept any data on it and if I find it, I'll post or send it to you.