starting Exjade

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Offline mummy_timmy

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Re: starting Exjade
« Reply #60 on: March 06, 2012, 01:06:09 PM »
Hai and Salam Mama Fatin,

My little z get his month supply of multivitamin without iron every month together with folic acid.You just need to request from the Dr.Little Z get his treatment at PPUM.



Re: starting Exjade
« Reply #61 on: March 07, 2012, 01:06:59 AM »
Salam mummy_timmy,

My daughter get her treatment at HUKM, could you please ctc me through my email add liza.anjeliza@gmail.com for further information sharing. Really appreciate it.

Hi Andy and all,

Just would like to ask about having the exjade with lychee juice? Actually not so sure if it really pure juice or not but the manufacturer claimed it was made from pure lychee juice. My daughter loves it very much and could finish it without any complain. Need some verification on this.

Thanks all

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #62 on: March 07, 2012, 01:14:09 AM »
Pure lychee juice is very nutritious, as long as there is no added sugar. It is low iron but high in vitamin C, so she should not drink it with meals that contain a lot of iron. If she will take Exjade with lychee juice, then do so, because she'll be taking it on an empty stomach. Try to avoid with iron rich meals and get her used to it as a snack so that the vitamin C doesn't add to iron absorption from her diet.
Andy

All we are saying is give thals a chance.

Re: starting Exjade
« Reply #63 on: March 07, 2012, 01:22:52 AM »
Hi Andy... now I am happy with your explanation... :biggrin... and thank you so much for your advises..

Re: starting Exjade
« Reply #64 on: March 08, 2012, 01:26:22 AM »
Hi...

This morning I found out that there are rashes all over her body especially on her neck, chest and arm... I read from the template given that the rashes is  a common situation. In what condition should I refer to the Doctor?  :( :(..

Thanks all

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #65 on: March 08, 2012, 04:48:45 AM »
OK, this is common with Exjade. When first starting Exjade you shouldn't start on the full dose immediately. You should start on 1/3 to 1/2 dose for about two weeks, just to get the body accustomed to the drug. If the rash is bad, I would suggest stopping Exjade until the rash clears up, and then starting it again with a low dose and take a couple weeks before you raise it to the normal dose. Also, splitting the daily dose into two and taking half in morning and half later in the day, will also reduce the reaction. If the rash isn't too bad, you can probably just lower the dose for a couple weeks.
Andy

All we are saying is give thals a chance.

Re: starting Exjade
« Reply #66 on: March 08, 2012, 10:27:11 AM »
owh thanks Andy... should I tell the Doctor that I am lowering the dose? Hmm... why the Doc didn't tell us about starting with a lower dose... poor my daughter... :( :(... I'll start tomorrow by reducing the dose about half for 2 weeks and we'll see how... thanks again Andy for your explanation...

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #67 on: March 08, 2012, 03:14:18 PM »
Even Novartis instructs to start with a lower dose at first and then move to the required dose. The recommendations we give at thapal are based on the real life practice of hundreds of patients. It's up to you to tell your doctor. If your doctor disagrees, you can show him the prescribing information, "The recommended initial daily dose of EXJADE is 20 mg/kg body weight."
I go farther and say 10-15 mg/kg for the first one to two weeks, depending on whether or not the patient shows signs of reaction.
Most doctors are unaware of splitting the dose. This strategy was developed by the members of thalpal and has been shown to be both easier to take without reactions, and also more effective as a chelator.
Andy

All we are saying is give thals a chance.

Re: starting Exjade
« Reply #68 on: March 09, 2012, 10:11:15 AM »
Actually this morning I cut the pill into two and just gave my daughter half dose... there's no significant effect yet so far but I did tell the doctor through a phone call. She just told me to stop the medicine immediately and come to see her next Tuesday since the clinic open on Tuesday and Thursday only. In the mean time, I think I should stop the Exjade first because the rashes seem scary to me... I will discuss with the doctor with your suggestion to start with a lower dose or by splitting the dose. Logically, that's make sense and I am totally agree with you. Thanks Andy for your thoughts.

Best Regards

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Offline Emby

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Re: starting Exjade
« Reply #69 on: December 07, 2012, 01:43:22 PM »
Hi....my 15 yr old son has been told by his Consultant to start taking Exjade (switch from Ferriprox). This is because his liver readings has gone up.
 In 2009 it was 2.4mg, 2010 3.5mg and 2012 5.6mg. She has told him to take 4 tablets (500mg) once daily. Having read through some of the articles relating to this drug I understand that it is good at chelating Iron from the liver but my worry is that his ferritin is
presently at 360...is the ferritin too low to start with Exjade and do you think the dose is too high considering it is advisable to start at  a lower dose due to side effects? He weighs 67.5.

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Offline Pratik

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Re: starting Exjade
« Reply #70 on: December 07, 2012, 02:50:50 PM »
Hi....my 15 yr old son has been told by his Consultant to start taking Exjade (switch from Ferriprox). This is because his liver readings has gone up.
 In 2009 it was 2.4mg, 2010 3.5mg and 2012 5.6mg. She has told him to take 4 tablets (500mg) once daily. Having read through some of the articles relating to this drug I understand that it is good at chelating Iron from the liver but my worry is that his ferritin is
presently at 360...is the ferritin too low to start with Exjade and do you think the dose is too high considering it is advisable to start at  a lower dose due to side effects? He weighs 67.5.
Split the dose.

If not 500, 350 or 400 shall be good. Don't worry, low dose will remove iron from parts such as liver, heart, etc.

-P.
Every child is special.

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #71 on: December 07, 2012, 03:13:31 PM »
The dose of 2000 mg is correct. As Pratik said, splitting the dose and taking half in the morn and half later in the day, will lessen side effects.
Andy

All we are saying is give thals a chance.

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Offline Bostonian_04

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Re: starting Exjade
« Reply #72 on: December 07, 2012, 05:12:34 PM »
Hi Emby,

My daughter's ferritin is around 360 as well and she is on Exjade too. Her hemo strictly told us to split the dose - 1/2 in the morning and other 1/2 in the evening. So far we have not see any ALT/AST increase with this. So, splitting the dose is probably the best for your son as well.
Quis custodiet ipsos custodes ? - Plato

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Offline Emby

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Re: starting Exjade
« Reply #73 on: December 07, 2012, 09:56:38 PM »
Thank you all for your reassuring replies.. :smiley

Can anyone help me with understanding what is the difference between ferritin and organ Iron?

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Offline Pratik

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Re: starting Exjade
« Reply #74 on: December 08, 2012, 05:43:27 AM »
Thank you all for your reassuring replies.. :smiley

Can anyone help me with understanding what is the difference between ferritin and organ Iron?
Ferritin reflects the value of iron in blood stream. Scans like Ferriscan help to examine the exact amount of concentration/deposition of iron in organs such as heart and liver.

So while talking to Eileen Scott of CAF recently, I came to know that the ferritin maybe very low or near to normal, but it's not necessary that organ iron will be less as well. It may also be the case that deposition in organs is very less and just the ferritin in blood stream is shown to be high, so that is a good point as well.

-P.
Every child is special.

 

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