Best Combination with Asunra for more Chelation of Iron

My daughter Samyuktha is 5 years old (September 9th was her Birthday).She is 14 kgs.Her dosage of Asunra is 400mg/day.Her Iron levels make me cranky at times.6 months back it was 2069ng/dl(before that it was 2950ng/dl.Last month when i checked her ferritin it was 3170ng/dl.Is it because her excess iron is getting collected in the blood stream.What is the best oral chelator that can possibly be combined with Asunra and what should be the dosages of both Asunra and the other Chelator for a good reduction in Iron levels?We will be going to her haematologist next week.She may prescribe a possible combination therapy.Cant be sure of that.Doctors here insist only on BMT's.This is saddening.Friends,please pray for my dear daughter that her ferritin levels come below 1000 at the earliest.

Thank you Guys.

Viji.

Hi viji
I was in a similar situation a year back. Inspite of giving my son 30mg/kg dose for almost 2 years his ferritin was shuttling between 2000 - 3000. It was then that I started to split his dose to twice daily (instead of 500mg at one time I gave him 300mg in the morning and 200mg in the evening). It was only then that his ferritin started to show a significant drop. Three months back his ferritin was 1400.(almost a year after splitting his dose).You should try splitting the dose for samyu as the metabolism of some are such that the med leaves the body much earlier than in the rest.

Maha,

Thanks for the update. We've been suggesting splitting the dose in various situations and noting that taking it twice daily gives a true 24 hour chelation that a single dose cannot. I think you are giving us more evidence to continue giving this advice. Novartis needs to take note and allow science to take precedence over marketing.

Thanks very much for the information Maha.But Iam splitting the doses since 2 months only.May be i have to give it some time.Right? I do not find her passing black stools.Is that something to concern about? Does nt regular intake of Asunra pass black stools? I am really ignorant on this part.And one more question Dear Maha and Andy,should i try another chelator with Asunra? or wait for Asunra alone to do its Job? If i can include another chelator with Asunra , what is it and their dosages? Samyu is 14kg and she is 5 years old.Are there any other precautions i need to look into? you see,i was really taken aback by her Ferritin count last month at(3179ng/dl).Thats why iam a bit Panicky.You guys have been showing me the right path from the very beginning because of which my daughter has really grown up beautiful and healthy.Thanks to you all from the bottom of my Heart.

I would advise to just be patient. This trend is seen over and over with Exjade. The iron stored in organs and body tissue will be removed first and then ferritin will drop. I don't think combination chelation is needed yet and am hesitant to suggest it at her age. If ferritin remains high at age 6, then combination with desferal might be considered, but I think waiting is best. Iron stored in ferritin can't damage the body, but iron in tissue does, so removing that is most important.

Thanks Andy Brother.Your words does have a remarkable positive vibes in it.I feel quite confident now.

Hi viji
Like Andy said patience is the key. It will take some time for the ferritin to drop but it will eventually drop. My son also does not pass black stools, so thats not something to be concerned about.

maha

Thanks a lot Maha.I feel comfortable now.Without you guys,Cant imagine how my life will be?