is 5 nights a week enough???

hi all,
we are persevering with the desferal even though we have had many downs but at least he is coping better now.  what i want to know is that the haemo told me do desferal for 6 nights.  christian is 5 and weighs 20.6 kg.  He has 1.5 units of blood (380 mls in total) every 4 weeks.  which i know is  not a lot because another little 5 yr old in the hospital gets 3 bags of blood.  Christian has one vial of desferal diluted with 10mL water.  i would like to give it 5 nights a week.  meaning have a saturday off and day during the week off to break it up.  do you think it would be ok?  or is that one night going to make a big difference to his ferritin levels.??

hi vic,
I think 5 nights of desferal would be ok.I remember when i was christians age and on desferal i had it 3 nights.As your skin from the desferal gets lumpy etc.But obviously the more nights he can have it the better as it only benifits his health & in the long term christian will not have so many problems with his health if he can keep his iron level as low as possible.

Hi Vic,

You are giving him a very diluted mix (500mg in 10 ml) compared to the normal 500 mg in 5ml. Therefore I assume it would be o.k (if he can tolerate the normal concentration and there is no other reason why his doctor recommended you the diluted mix) and you don't want to miss that vial; then give him one injection of 1000 mg in 10 ml just once between the week (Tuesday or Wednesday) to average it off.

Take care, Peace!

Hi,

I would never ever adjust the Desferal dosage on my own, Our daughter is 4 and she is getting 8 viles for the period of six nights. It is much harder on the parent and on the Child but we would stick to doctors advice.

Regards.

Hi vick,

I agree with sajid about the dilution part, maybe you should just ask the doc about the option sajid presented. if christian is not allergic to desferal  you can ask the doc to bring down the 6 days to 3 days....it would be much easier for christian if that happens.

rgds,

For desferal to lower iron it should be used at least 5 days per week, if no other chelator is being used. If used in combination with another chelator, then desferal can be used less. 3 days per week is not sufficient for any patient who needs to lower iron. I agree with Canadian Family. Do not change anything until your doctor has agreed. As far as the dilution, desferal works best when taken over a longer period of time so diluting it achieves this goal. Desferal does not stay active in the body for long so the longer a patient is taking the infusion, the more effective it will be. Do not lower the amount of water being used. 500 mg desferal in 10 ml water will produce a better chelating effect than 5 ml water because it will take longer to infuse and prolong the chelating effect of the drug.

thanks guys,
i would never change the dosage and that was never my intention.  the doctor has explained that a slow infusion works best.  that is fine with us.  i just wanted to know if there is a big difference between 5 and 6 nights.  at the moment we are doing 5.  if his next results show us that this is not being effective then up to 6 we will go.  still counting days until exjade is an option though.
cheers, vic

Hi Vic,

I forgot to mention that when concentrating the Desferal we must also reduce the speed of the pump for the above mentioned reason by Andy.

Take care, Peace!