Ferritin level of nanuaru

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Ferritin level of nanuaru
« on: November 29, 2008, 06:32:12 AM »
Good Afternoon everyone ,
      I'm bit upset since yesterday ,cutiepies ferritin level is increasing day by day , yesteday it was 1300 and 2mths back it was 1080. she is 16mths old and had 14 BT till date. Does it meen it is time for her to start her iron chelation . I'm bit worried how she would communicate to me if she has some joint pain due to kelfer since till date she has not started talking her only utterences are papa mama. though she communicates with gestures .
             Secondly I'm taking first step towards BMT . I'm going to AIIMS Delhi tomorrow for HLA typing and also getting her registered in Asiatic bone marrow society. I'm very frightened with the thought of losing her in this procedure but still i've made up my mind to go for it . may the god help us . pls sgst
                           Father of cutiepie   

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Offline Manal

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Re: Ferritin level of nanuaru
« Reply #1 on: November 29, 2008, 10:56:16 AM »
Hi Nanuaru

What is the opinion of your hematologist?? Usually you start chelation when ferritin goes over 1000, but cutiepies i guess is very young as there is no clinical trails of Kelfer below the age of 2
http://www.cipladoc.com/therapeutic/admin.php?mode=prod&action=disp&id=212
Quote
Paediatric Use
There is no clinical experience of Kelfer in children below two years of age. Therefore its use is not recommended
.

But at the same time we have members that started using it as young as your daughter and i think in all cases you have to start with a very low dosage to avoid any joint pains and any other complications. you can check this link for a similar discussion
http://www.thalassemiapatientsandfriends.com/index.php?topic=226.0

Good luck and keep us updated

manal

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Offline Sharmin

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Re: Ferritin level of nanuaru
« Reply #2 on: November 29, 2008, 04:22:27 PM »
Dear father of Nanuaru,

My son began chelation at 18 months of age.  He was given desferal 3X a week, 10hrs a day.  He actually did very well at this dose for many years.  His ferritin remained between 900 - 1200 during these years with the chelation.

He began exjade this summer, 6 weeks before his 10th birthday.  Exjade seems to be going quite well but initially there was some nausea and decreased apetite, but that seemed to resolve over time. 

We were told that L1 has far more side effects than exjade, therefore their preference for young children would be to give exjade rather than L1. 

That being said, desferal is the safest chelator of the three but you do have to use a needle.  The first little while with desferal is an adjustment just like transfusions but it becomes a breeze over time. 

If you notice sudden big changes in ferritin, they are unlikely to be a reflection of iron overload - but a slow increment is likely indicating that she needs to begin chelation soon. 

Best of luck in making you decision,

Sharmin

Sharmin

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Offline Andy Battaglia

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Re: Ferritin level of nanuaru
« Reply #3 on: November 29, 2008, 08:31:29 PM »
Nanuaru,

Desferal is the only chelator that is readily used before age 2. I would suggest talking to your doctor about the possibility of taking IV desferal during the transfusions. This will slow the accumulation some, without yet starting regular chelation. At age 2, I would suggest trying asunra or desirox, which are both versions of exjade. Desirox is made by Cipla and is much cheaper than asunra or exjade. Kelfer is another possibility but as Manal said, it shouldn't be started before age 2.
Andy

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