emergency cheletion needed

hi friends iam father of a three year old son, named SUBHAN  suffering from thelesemia major, he was using desferol and last time using desferol his iron level was 2400ng/ml. then 5 months ago i used to give him asunra (exjade) 200mg 24/7 on regular basis, his body weight is 13.5kg. but the worry started here that inthese five monthes of regular usage of asunra(exjade) his serrum ferritin has gone up to 7000ng/ml rather than decreasing from 2400ng/ml. Friends iam really worried about his health. kindly guide me what to do, wether i should continue asunra (exjade) or start with desferal.
    One more thing that wether dosage of asunra is rightly administred or not should it be increased.
    can any body tell me that wether 5 months are sufficent for arunra therepy or much more time is needed, if yes then how much time is needed.
                                    plz help me and reply me soon,
                                    
                                    waiting for favourable response,
                                     
                                    ZAHID ALAM.

Dear Zahid,

After the first two months on the lower dose if your son tolerated the exjade well his dose should have been increased to 405 mg  (30mg/kg). 

Exjade removes iron from tissue and organs in the body and releases it into plasma therefore the serum ferritin appears to be much higher than his actual iron levels actually are.  Patients are often startled when the SF levels come back at high levels (like the one you describe for your son).  Once the iron is excreted from his body you will see his SF levels decrease.  If your son has tolerated exjade well his doctor should increase his dose to 405mg now because exjade must be given at 30mg/kg to effectively remove iron. 

Please let us know if you have any other questions and best of luck,

Sharmin

Hi,

I have had the exactly the same problem while starting with Exjade. My ferritin was quite stable when i started so it never came above 3000. I started in September and my in and output of iron was in late December the same!  I am still not taking the end dosage though (every two weeks plus 125mg) Also I decided to move transfusions from a two week scheme to one every 3weeks.
I know Exjade does not work for everyone, but we all should give it a try. I have heard that your ferritine can increase even after 9 months, but than it (can) come down.
Everything what Sharmin said was right. Indeed, the dose of Exjade should be increased.

Hi,

Welcome on the forum,Even if you start Asunra with the lowest dose of 20mg/kg,for your son's weight it comes to 270 mg,so you are giving him a very small dose,you should increase his dose gradually,like start giving him 20 mg/kg i.e 270 mg for 2 weeks,then if he tolerates it well,switch him to 25 mg/kg ,and then finally to 30mg/kg i.e 405 mg,i know Asunra is available in 400 and 100 mg tabs,so your son's final dose would be a tab of 400 mg daily.Then hopefullu you'll see good results.

Zaini.

Definitely don't worry. As Zaini has told you, the dose has to be higher. Until you get to 30 mg/kg body weight daily, you will not see a lowering of the ferritin. Now that his body is used to taking Asunra, it is time to raise the dosage. It can take more than a year to see the true progress, so patience is required. For most patients, this will be true. As they slowly adjust the dosage upwards, their ferritin does increase but once they reach the high dose, the ferritin does begin to drop. I have seen this pattern over and over, so please have patience. Exjade (Asunra) is not much use in lowering iron unless a high dose is being used daily, so please get him up to 400 mg daily and adjust this upwards as he grows.

While looking at several brands of vitamin C this afternoon I noticed that some vitamin C supplements contained aluminum.  I don't think that aluminum is good for anyone - but those taking exjade should certainly avoid it. 

Sharmin

Hi Zahid ,
  to the forum , i hope you are getting your answers .. please stay in-touch and keep posting its nice to have you here . it feel's very good when i see that one more person is safe to being played in doctors hand they normaly do the experiments on your child.. its nice to see that another man is getting right info and in safe hands .. pleae stay in-touch with us ... a lil introduction of me : Umair 21 pakistan

Best Regards
Take Care
Umair