How is Desferal given

[Chirley]

Hi,

my doctor told me today that as I can't take Exjade that his preferred iron chelation will be Desferal IV.

He talked about having continuous therapy through a pump using my port. It wasn't until I got home that I realised I needed to know more.

How long would the treatment last...are we talking days, weeks or months?
and how often would the pump reservoir need to be changed/refilled, daily/weekly?

Anyone know?

I'd be grateful for any information.

Regards

[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.

[Chirley]

Thanks for that Marlene.

I can't say for sure but I think he was talking about 24 hrs a day. I have a s/c port.

If you were given 5 prefilled syringes then the drug must have at least that length of time once reconstituted. I'm hoping to only need weekly visits which could be combined with my IV Copper days. The protocol for accessing my port has changed recently and instead of changing the needle every 72 hours, they now change it weekly.

From what you say it could take months for the ferritin to drop, that's a long time to carry a pump around 24 hrs a day. Maybe alternating one week on and one week off would work, oh well, something to work out with my doctor.

Thanks again, it's made me realise that this is going to be longer term than I thought.

Regards

[Helen Robinson]

Hello Chirley

It is a shame you have to go down the desferal path but is is necessary to keep the ferritin down. It is much easier when your Dr does not wait until it is quite high as happened with David. He used the pump at night and became used to it very quickly. The hospital taught him how to use it subcutaneously. The port makes it more convenient but a nurse would need to refill it. It is the same type of pump that is used for chemo and I have seen patients getting them refilled. We had to buy ours and I donated it back to the hospital. Follow Marlene's advice and you should be ok. If there were any side effects they were not especially noticed with all the others.

I hope this sudden cold weather does not last long. I miss my sunny wide verandahs in the country but I am looking forward to visiting my son in Wales during their summer.

Look after yourself and keep smiling.

Helen

[Birgitta-A]

Hi Chirley,
You have already got much info about Desferal but I will write about how I received Desferal to make the picture more complete. I got Desferal for 4 days in connection with transfusions into my sc port. The homepump is about the size of a lemon and kept into a pouch with a belt (you can see the pouch at the info). http://www.iflo.com/prod_homepump.php

I tied the pump around my neck when I took a shower - otherwise there were no problem with the pump. The nurses put the pump in place and took it away after 4 days. They ordered it from the pharmacy and throw it away when it was empty. I had no adverse reactions.
Kind regards
Birgitta-A