Advice about Iron Chelator

Hello,
I am new to this forum. I had three & half year daughter. Blood transfusion is done monthly since last three year. We are giving her desirox. Initially ferretine level was at 1900. After six month it was at 1400. Again it increased to 2100 & 2800 after gap of 6 months. Now my doctor had told me to wait for three months after that if level is not reduced than we need to change iron chelation medicine. Either Kelfer or Desferal Injection. Before six month we had increased dosage to 500 Mg & current weight of My daughter is 12.5 K.G.
Please advice me on this. Further can we provide her fruits with higher Vitamin C content like Kiwi,
orange or lemon juice to help reduce iron level.

Hi Hemendra,

The dose is good and should show results. My suggestion is to do what many of the parents at thalpal have chosen to do and that is to split her dose into two, taking half in the morning and half later in the day. This gives a true 24 hour chelation period that one daily dose cannot. Be patient. Exjade does not show results quickly in ferritin scores, but it is removing iron from tissue and organs.

Citrus can be taken as a snack in between meals. It should not be taken with iron rich foods, as vitamin C increases iron absorption from foods.

Hi
Desirox is available in 250mg also. So you can make it morng and eveng split dosage
As andy has advised split dosage is quite helpful.

Hi,

Should one split dose even if the dose size is as small as 500mg? When and how should the second split dose be taken? Are there any precautions to be taken care of?


Regards,
Himanshu

It should not be considered in absolute terms i.e. 500mg But

in terms of (%) and it comes to 500mg/12.5 kg = 40mg/kg

Which is the maximum dose of this drug

i.e. 40mg/kg

with a gape of 12 hrs the split dosage can be taken. e.g. 8Am and 8 pm

Monthly SGPT, S.creatinine and S.Ferritin every 3 months

and hydration is utmost important

Add one another mantra
which is
supplements like Calcium, Magnesium, Vitamin D, Vitamin C, Vitamin E (natural)

Yes, especially when using the 40 mg/kg dosage, as it can be harsh on the stomach. Anywhere within 10-14 hours after the first dose, the second dose can be taken.

Hi,

Thanks all for reply & suggestions.

Regarding split dose 250 MG dose is available but my doctor had suggested that it should be taken with empty stomach (at least four to five hour).Please advice on this.
Further currently we are providing desirox with water mixed with sugar as my daughter is not drinking it with plain water. previously we were giving it with orange juice. please advice winch is best way.
We had started giving her lemon juice at around 5.00 p.M.daily as we heard that vitamin C helps in removing iron but from reply we came to know that it is increasing iron absorption. So please advice weather it will help in removing iron or it will increase it.

Hi Hemendra,

second dose can be given before half an hour of dinner.

ya , the taste of desirox is not liked by baby thals. if u r giving it with orange juice thats no problem but use only natural juice and not processed or synthetic flavour.

lemon juice should be given in between two meals , so it do not lead to iron absorbtion from food.  It increase iron absorbtion if given with diet.

e.g. i do take lunch at 2 p.m so i drink lemon water with honey @ 12.30pm or 01.00pm.

Hi
I am ritesh 26 years old. I am thal major and transfusing 600-700 ml of RBC every 15 days. My feretine was about 3900 in may2013 and I was taking 2400 mg asunra per day and my body weight is around 60kg.
From may 2013, I starting taking desferal 2vials twice a week along with asunra, then my ferretine came down to 2700 in Aug2013. But rose again to 3400 in nov 2013 with the same treatment.
One thing I observe is that when I started DFO, my urine was of reddish color after DFO. But from the past few month it is not so reddish even after taking 3vials twice a week.
I want to ask whether the medicine stops working or something else.
what else should be done to reduce the ferretine as I m on 40mg/kg/day of asunra from the last 2 years and my ferretine oscilates between 3000 to 4000 and even after starting DFO it is not coming down.

Hi Ritesh,

Have you had MRI"s of your heart and liver to detect the true iron load? Ferritin is not so reliable, so it would be best to get the scans to determine where your iron load really is, and if you need to adjust your chelation regimen. Two years of regular chelation at these levels should bring more progress that is shown in your ferritin levels.

Hi Ritesh,
Nice to meet u on thalpal.

1. U r requirement of blood is xceeding the limits of blood transfusion quantity in a month i.e. 20ml/kg/month.

2. ur dosage of asunra is good. keep it continue and split the dosage

3. Ur on right path to reduce ferritin by adding desferal to ur chelation regimen.

Do not worry for the discoloration of urine, means it is reddish or not so much reddish.
To get adequate benefits of Desferal u have to add Vitamin C (max dose 250 mg/day) after one month of starting desferal, it will bring more iron out.

Looking on ur weight , u should take 5 vials at a time of desferal. Increase gradually the dosage of it from 3 to 4 vials then 5 vials in 2 days in week.

Ferritin fluctuate widely so do not have this report with fever or after bt. It takes much time to bring down ferritin.

As Andy said, Scan is important to know true iron load , and ferritin is not so much reliable.

Hope it help.

Feel free to ask any question.

I am also on same regimen. Desferal and Defrijet combo.

Hello,
I am new to this forum. I had three & half year daughter. Blood transfusion is done monthly since last three year. We are giving her desirox. Initially ferretine level was at 1900. After six month it was at 1400. Again it increased to 2100 & 2800 after gap of 6 months. Now my doctor had told me to wait for three months after that if level is not reduced than we need to change iron chelation medicine. Either Kelfer or Desferal Injection. Before six month we had increased dosage to 500 Mg & current weight of My daughter is 12.5 K.G.
Please advice me on this. Further can we provide her fruits with higher Vitamin C content like Kiwi,
orange or lemon juice to help reduce iron l

We had done testing for ferrretine in september it came doen to 1900 again latest testing was done in
last week but ferretine again increased to 2800. We are very much worried about it.
please advice what can be done now.

Hemendra,

Try splitting the dose so that you're giving half in the am and half in the pm.
Ferritin isn't always a good indicator of liver iron - and inititially ferritin levels
Increase with exjade because iron is released for the organs into the plasma to he excreted.
Continued use of exjade, dose split to twice a day should decrease your child's iron levels and this
Will eventually be reflected in the ferritin level.

Best of luck,

Sharmin

Thanks Andy, thanks Hanumant
I hv done my MRI T2* in nov2012 and the report was:
Liver:6.39
Heart:29.467
you r right Hanumant, I need to increase the dose and as well as frequency of desfral and I also taking 250 mg vit C with every DFO.

Regards
Ritesh