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Began exjade last week

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Offline Sharmin

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Began exjade last week
« on: August 05, 2008, 05:58:14 AM »
My son began using exjade last week - Wednesday.  He is also using desferal 5X week 12hr infusions. 

So far things seem good - I haven't noticed any changes.  He is getting a daily 500mg tablet - he weighs 26 kgs. 

Should we be noticing any changes at this point?  Change in stool color etc?  So far we have not noticed it. 

At what point do we look for rashes etc? 

So far so good:) 

Thanks all,

Sharmin
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Sharmin
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Offline §ãJ¡Ð ساجد

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Re: Began exjade last week
« Reply #1 on: August 05, 2008, 06:22:20 AM »
Hi Sharmin,

I'm so happy for you :yahoo

Well, you should not worry about the rashes as they don't happen always in every case.

Everything should be smooth unless he complains of itching or upset tummy.
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Offline cherieann

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Re: Began exjade last week
« Reply #2 on: August 05, 2008, 06:45:27 AM »
Sharmin I am so excited for you.
Wish you both all the best
Lots of love
Cherie :woot
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Offline Manal

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Re: Began exjade last week
« Reply #3 on: August 05, 2008, 10:14:25 AM »
Best of luck my friend :hugfriend

manal
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Offline nice friend

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Re: Began exjade last week
« Reply #4 on: August 05, 2008, 12:29:04 PM »
best of luck to you n your son sharmin :
i hope n pray that exjade will work alot for ur son ...
n u will find best results to it ....  give a   :high5 on my behalf .. wish you ...



bye
« Last Edit: August 05, 2008, 01:00:52 PM by nice friend »
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Offline Sharmin

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Re: Began exjade last week
« Reply #5 on: August 05, 2008, 04:27:34 PM »
Thanks everyone  :ty

I hope that this combination therapy brings his iron down quickly. 

Should his stool color have darkened by now?  I'm not sure what to look for to determine how things are working. 



Sharmin
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Kathy11

Re: Began exjade last week
« Reply #6 on: August 05, 2008, 09:58:14 PM »
To Sharmin.
 :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers

It will be alright.
Kathy
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Offline Canadian_Family

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Re: Began exjade last week
« Reply #7 on: August 06, 2008, 12:07:27 AM »
Hi Sharmin,

Congratulations on starting the exjade. Since your son is on a combination therapy I don't think the colour of stool will change immediately. The iron excretion perhaps is going two ways now, i.e. through urine and stool. The colour of urine turns orange when using desferal and stool turns black/dark brown when using exjade. Your son since using both, chances are that you do not see a visible difference in the colour, this is just an assumption.

I sincerely hope the combination therapy works best for your son. Please keep us updated.
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Offline Sharmin

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Re: Began exjade last week
« Reply #8 on: August 06, 2008, 05:25:49 AM »
Thank you for your encouragement and wishes - I am so touched :)
You guys are wonderful.

Canadian Family, it is true my son is on combination therapy so I may not notice the change in his stool so early.  I have a few other questions for you - we are currently mixing his exjade in orange juice with calcium could that present a problem? 

Also, my husband has been stirring his pill while it dissolves with a metal spoon and has even left the spoon in it while it was dissolving.  I am wondering if it is okay to use metal while mixing the exjade because it is a chelator.  Perhaps I am being paranoid...

Thank you very much for your help - your experience with exjade is very helpful.  I hope that the combination therapy gives good results for my son - and we can help others with our experience.   

Since beginning Rituximab his transfusion requirements have dropped considerably - I hope to eliminate the prednisone completely soon.  Our last rituximab treatment is this Thursday.  The doctor told us that his antibody levels were always very low, just high enough to cause some hemolysis but never out of control.  My hope is that things settle down very soon.  The decrease in tx requirement along with the aggressive chelation should reduce the overload very soon. 

I am very nervous about the results of his MRI to determine his heart function and iron levels in his heart.  We should receive them in another week or two.  My little guy will need a lot of prayers  :pray :pray :pray :pray :pray :pray :pray   He looks well, and they are expecting things to be normal but I am still nervous.   

Thanks again for your help friends,

Sharmin

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Offline Andy Battaglia

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Re: Began exjade last week
« Reply #9 on: August 06, 2008, 06:50:24 AM »
Exjade should be stirred with a plastic or wooden spoon and never put in a metal container or stirred with a metal utensil. The exjade will chelate the iron from the metal utensil and this will reduce its effectiveness, as it will already have bound with iron.
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Offline sydneygirl

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Re: Began exjade last week
« Reply #10 on: August 06, 2008, 12:05:46 PM »
hi sharmin,
i have been on exjade for over a year & a half now,one thing with the exjade & it may not be in every case but
sometimes you can go to the toilet more frequent then normal(bowel motion) sorry for the details everyone lol
and yes it can be a darker colour,sometimes i have felt very nauseaes also & do not mix with metal only plastic cup & spoon.
best of luck!
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Offline Sharmin

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Re: Began exjade last week
« Reply #11 on: August 06, 2008, 03:42:28 PM »
Thank you so much for letting me know!
I feel so bad that we have been mixing it with a metal spoon!  We will change that immediately.
Is it okay to have a ceramic or corningware cup?  or is it best to use plastic?  We have been using corningware. 

I have noticed that he is going to the washroom more often. 

Thank you for all of this useful info!

Sharmin
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Offline Sharmin

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Re: Began exjade last week
« Reply #12 on: August 06, 2008, 04:53:41 PM »
also, is it okay if the OJ is 'with calcium' ?
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Offline Andy Battaglia

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Re: Began exjade last week
« Reply #13 on: August 06, 2008, 06:57:44 PM »
The glaze used with ceramics sometimes contain iron so that should be avoided. Glass or plastic containers are fine.
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Andy

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Offline Canadian_Family

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Re: Began exjade last week
« Reply #14 on: August 06, 2008, 07:55:07 PM »
Quote from: sharmin on August 06, 2008, 04:53:41 PM
also, is it okay if the OJ is 'with calcium' ?

Some Orange Juice brands do come with calcium added. Calcium is good for thalassemia patients in any case, so I don't think it is a problem, infact I think it is good.
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Regards.
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