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1st Pan-Middle Eastern Conference on Haemoglobinopathies ..May 2009, Syria

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aysam:
every day at 5oo t 600 am i isolve it in a bit of water and apple juice and just shake it in the bottle he only takes it in the bottle the only way he will
and you think manal that in lebaonon they will do iv desfral

Andy Battaglia:
Hi Mariam,

Exjade should be stirred and not shaken. Stir with a wooden or plastic spoon, but never expose Exjade to metal. Do not skip any days. As He gets up to the recommended dose you will begin to see more progress.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1928.msg16165#msg16165


--- Quote ---2.1 Dosing Information
The recommended initial daily dose of Exjade is 20 mg/kg body weight.
Take Exjade once daily on an empty stomach at least 30 minutes before food, preferably at the same time
each day. Do not chew tablets or swallow them whole. Do not take Exjade with aluminum-containing
antacid products. Calculate doses (mg/kg per day) to the nearest whole tablet. Completely disperse tablets
by stirring in water, orange juice, or apple juice until a fine suspension is obtained. Disperse doses of <1 g
in 3.5 ounces of liquid and doses of ≥1 g in 7.0 ounces of liquid. After swallowing the suspension,
resuspend any residue in a small volume of liquid and swallow.
Individualize the decision to remove accumulated iron based on anticipated clinical benefit and risks of
Exjade therapy. In patients who are in need of iron chelation therapy, it is recommended that therapy with
Exjade (deferasirox) be started when a patient has evidence of chronic iron overload, such as the
transfusion of approximately 100 mL/kg of packed red blood cells (approximately 20 units for a 40-kg
patient) and a serum ferritin consistently >1000 mcg/L.
2.2 Dose Modifications
After commencing initial therapy, monitor serum ferritin every month and adjust the dose of Exjade if
necessary every 3-6 months based on serum ferritin trends. Make dose adjustments in steps of 5 or
10 mg/kg and tailor adjustments to the individual patient’s response and therapeutic goals (maintenance or
reduction of body iron burden). If the serum ferritin falls consistently below 500 mcg/L, consider
temporarily interrupting therapy with Exjade. Do not exceed Exjade doses of 30 mg/kg per day since
there is limited experience with doses above this level.
The risk of toxicity of Exjade may be increased when inappropriately high doses are given in patients
with low iron burden or with serum ferritin levels that are only slightly elevated. The safety and efficacy
of Exjade when administered with other iron chelation therapy have not been established.
--- End quote ---

Manal:
Yes Mariam, i think so because the way of management of thal is the same in both Egypt and Lebonan and this is what they do here. It will also be a good idea if you emailed Dr. Ali Taher and ask him about his opinion on this

manal

aysam:
manal
i did email dr ali taher last night no reply he hasnt ever replied to me not once

aysam:
HI professer how are you ?

i met you before at singapore

 ??? ??? ??? ??? ??? ???

question doctor please



i am comeing to lebanon hopefully very soon im just finishing my kids pappers to become lebanese and this is what has taken so long

but inshala this is happeing in the comeing months my concern for the time being is



























 

aysam who is born 1/5/06

weight   14 kilos

height   91.6

 

is takeing exjade

the dotors here in autralia took your advise and put the dose up to 375 wich he has started two weeks ago the transfussions stayed as they are one every four weeks

220mls of blood

his liver funnction test seem to be playing up every

 two weeks anyways my concern is his ferritin

always over 3000 it has maybe gone done couple of grams it was 4000

i give him exjade at 5am to  6am

 every morning mix it with apple juice

so i am doing everything right

i have asked for liver biopsy

but she said that at this point

no need for the biopsy she is suggestion to wait if the iron dosnt come down in a few months than we do one and if she finds the liver is damaged than it will be life threating wich then she will tell me he might die and also she is saying at this momment the iron is high but wont damage the liver until ten years i dont know this is very confussing to me you are the profsional please

i have one boy and never am i going to have kids again he meens so much to me i want him to live a normal life and when they talk to me about death it really scares me tell me doctor untill i am able to come to lebaonon what shall i do his iron is arond 3600 and he is needing blood every three weeks his stomach is always bloated and he isnt realy getting taller he always blinks alout i dont know if this has anythig to do with thalassemia but his couler is of white and when i did a xtray for his chest for a infection they notice a lession in his arm this is by accident they saw it they say its due to the bone marrow please doctor get back to me with your advise as soon as possible

i am going through depression at this becuse i know i cant go to lebaonon until he is a lebanese citizen for the chronic center i have saved 4 months of exjade and the hospital are going to give me 7 months supply so i will be ok for one year as i was told that they are very expensive in  lebanon

please professer ali taher help me hep him

i will be waitting for yor email

 
 :rolleyes :rolleyes :rolleyes :rolleyes :rolleyes :rolleyes

kind reagrds

mariam saba

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