Iron Chelation

My son lil A was on desferal for the first 10 years of his life (he began at 18 months).  His iron levels remained between 900 to 1200 for most of that time.  After developing an antibody, which required at times multiple transfusions weekly, his iron levels went up to 2800.  

At that time we began combination chelation, desferal and exjade.  Within six months his iron levels were down to 1500 and in one year his levels were 900.  Since then he has been on exjade alone and his current level is 344.  His transfusion requirment is modest - he is transfused every 2 to 3 weeks - but with exjade we are able to maintain his iron levels.  

Since switching to exjade we have seen his spine grow (length of upper body is often affected with desferal).  He sleeps more comfortably because needle sites were becoming very painful with desferal and our quality of life as a family has improved.  

The negative effects of exjade have been stomach upset, and loss of appetite.  To counter this we have begun giving him pepcid and so far he has had complete relief with it.  His appetite seems to have improved.  Early this month I also put him on a week long cleanse - during that time I gave him alfalfa - mostly green food - and we avoided meat, gluten and dairy during that week.  His stomach issues and gall bladder issues (he had some sludge in his gall bladder) seem to have resolved after this.  

I know that exjade has been problematic for some people but so far for us it has been a good thing.  I suggest beginning exjade before iron overload becomes a problem (in young children) - beginning with a very low dose with plenty of fluid. One can even start by taking a low dose on alternate days - eventually taking it daily and beginning to full dose.  It also helps to split the dose to twice daily.  Not only does splitting the dose help prevent side effects - because of the half life of the medication - it also makes it more effective.  

I hope this is helpful to others.  Remember to always monitor your child with every transfusion to ensure that liver enzymes or kidney function are not being affected.  

Best of luck chelating everyone,

Sharmin

Good topic Sharmin, here's with my experience so far.

My son started Asunra at the age of 2 1/2 with a ferritin of over 2500. His ferritin levels were increasing at an alarming rate. In just 6 months his SF had gone up from 800 - 2600. At the end of the first year of chelation his SF was still around 2000. Half way through his second year of chelation I started to split his dose to twice daily as his ferritin was still stubborn around 2000. Also I changed his dose timings from morning and evening to afternoon and night. This solved all his appetite issues and he had more time to eat his breakfast as he had also started school. Things were going good for a few weeks until he started getting repeated diarrhea and I had to discontinue his chelation each time. His diarrhea episodes lasted for almost 6 months with a gap of 5days - 3 weeks between them. In the meantime his SF has increased to 2900. His chelating dose was 31mg/kg.

In a couple of months his ferritin came down to 1900 and this time his reading was at 1400, the lowest from the time he has started chelation. He has a long way to go but now it has started to show a significant drop. Come October and he would have completed three years of chelation and hoping his ferritin would be less than 1000 then.

So if your ferritin is stubborn inspite of taking the maximum dose it helps when you split the dose.

Happy chelating everyone
maha

Yes Exjade has been good to us too,and thats why i get scared when the company starts giving excuses about stock availability and this and that,lil Z's ferritin last checked was around 1000,when she started Asunra it was 1400.

Zaini, do you have enough Exjade already or.... ?