what has been happning

Alia

71

hi everyone
my daughter sara is having puffy face and her iron is nearly 3000. we are giving 250 tablet of exjade everyday and it seems like it not wrking on her. plz can anyone tell us whether we should increase the dosage for her or start with somthing else.she is taking exjade for 4 monthes now.can canadian family anyone else help us plz
thanks alia

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§ãJ¡Ð ساجد

Beta Thal Major
1991
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اَسّلامُ علیکم Peace be Upon you

Re: what has been happning

« Reply #1 on: July 27, 2008, 12:38:39 PM »

Hi Alia,

It takes time. What is the trend of the S.F levels? Are they hovering around at a particular level or increasing/decreasing?

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Andy Battaglia

8793
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Re: what has been happning

« Reply #2 on: July 27, 2008, 03:17:26 PM »

Alia,

What is your daughter's body weight? The Exjade dosage is determined by body weight.

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Andy

All we are saying is give thals a chance.

Canadian_Family

1064

Re: what has been happning

« Reply #3 on: July 27, 2008, 10:09:59 PM »

Alia,

Andy's question is very important. To put things into some perspective, my daughter is taking 375mg daily (7 days a week) and she weighs 38lbs. It took her seven months to bring the S.F from 2400 to 1600.

Please note the proper dose for her weight is at least 500mg, but she is restricted by doctors because of her age. (please note currently exjade is not prescribed to children under six in Canada but my daughter cannot tolerate desferal and she got special permission to get exjade).

« Last Edit: July 27, 2008, 10:16:56 PM by Canadian_Family »

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Regards.

Sharmin

4155
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Re: what has been happning

« Reply #4 on: July 28, 2008, 01:01:15 AM »

Alia,

I hope that your daughter's iron decreases soon. I have also heard that it takes some time before ferritin levels decrease after beginning Exjade. I hope you figure out a good dose for your daughter. My son will begin his exjade/desferal combination therapy this week.

Andy, is having a puffy face a side effect of Exjade?

Thanks,
Sharmin

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Sharmin

Andy Battaglia

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Gender:
Will thal rule you or will you rule thal?

Re: what has been happning

« Reply #5 on: July 28, 2008, 04:07:11 AM »

Post marketing observations have shown that swelling of the skin (angioedema) has occurred in some patients. In severe cases, Exjade must be stopped. Alia, your doctor should be made aware of this, so the selling can be monitored. Any sign of a severe reaction should lead to at least temporary cessation of the drug.

http://www.rxlist.com/cgi/generic/exjade_ad.htm

Quote

Immune system disorders: hypersensitivity reactions (including anaphylaxis and angioedema(Angioedema is a swelling, similar to hives, but the swelling is beneath the skin rather than on the surface. The hives are called welts. It is also possible to have angioedema without hives.)).

http://www.exjade.com/hcp/about/administration/dosage-adjustments.jsp?disclaimer=Y

Quote

If severe hypersensitivity reactions such as anaphylaxis and angioedema are observed, EXJADE should be discontinued and appropriate medical intervention introduced.

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Andy

All we are saying is give thals a chance.

Alia

71

Re: what has been happning

« Reply #6 on: July 28, 2008, 11:14:06 AM »

Quote from: Andy on July 27, 2008, 03:17:26 PM

Thank you all for your replay ,Andy her wieght is 13.5 and she will be three in 2 monthes.
i dont know whats happning with her,iam really worried about her puffeness. i am going to talk to the doctors about it, her ferriten went down when she started exjade but after that it only went down little bit,as exjade is new, i dont know if saras doctors will have alot of knowledge about it.
andy do u know if it make all the body swell or just the face?
thanks once again
alia

What is your daughter's body weight? The Exjade dosage is determined by body weight.

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Alia

71

Re: what has been happning

« Reply #7 on: August 01, 2008, 07:10:56 AM »

hi all
i talk to saras doctor and she told me that the swelling is not that bad,she got adimia and its not that bad to stop the mdicine.sara is not angoadimia as she is too well for that , she would've had more swelling around evrywhare in the body. i was rlieve about that. my only worry is her fritten went even more up before was 2700 now after 1 transfusion it went up to 2900. the exjade is clearly not working.
alia

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