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May 21st, 2010, 10:18 PM
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#1 (permalink)
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Join Date: Aug 2005 Location: Toronto Canada
Posts: 23
| Starting Exjade
Hi everyone..I have THAL intermedia but don't transfuse...
I had an MRI done on my liver at the Toronto General Hospital by Dr Ward and he has advised me that my iron in my liver is 14.5
I will be starting Exjade and feel very nervous..Can I maybe get some feedback on Exjade??
Sincerely,
Joanne
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Consciousness: That annoying time between naps | 
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June 7th, 2010, 10:30 PM
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#2 (permalink)
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Join Date: Aug 2005 Location: Toronto Canada
Posts: 23
| Re: Starting Exjade
well I just wanted to report that I have taken Exjade 3 nights in a row and so far no issues..hope it stays this way! I am taking 1250
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Consciousness: That annoying time between naps | |
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July 16th, 2010, 10:36 AM
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#3 (permalink)
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Join Date: Oct 2005
Posts: 297
| Re: Starting Exjade
i've been taking 2750mg for quite a while now and everything is ok.
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July 20th, 2010, 09:46 AM
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#4 (permalink)
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Join Date: Dec 2006 Location: Sydney
Posts: 10
|  Re: Starting Exjade
Hey Joanne, good to hear that exjade is available to you, it is a heaven sent compared to the desferal injections! :)
Poppy, can I ask you, do you get side effects from the Exjade??
I've been on it for maybe 2 years and I'm getting very bloated all the time. Have ruled out diet and other things and wondering if it's the exjade?
It's driving me nuts....
any thoughts? heard of anyone else with bloating?
thanks, Marisa
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July 21st, 2010, 09:50 PM
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#5 (permalink)
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Join Date: Oct 2005
Posts: 297
| Re: Starting Exjade
I've been on it for a year this time. This is the third time i've been on it. they've upped my dose to 40mg/kg for it to work. I have been getting bloating and sometimes i get constipated.
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August 4th, 2010, 11:46 AM
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#6 (permalink)
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Join Date: Dec 2006 Location: Sydney
Posts: 10
| Re: Starting Exjade
me too Poppy, the bloating is really really getting on my nerves!! grr!!
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August 17th, 2010, 11:47 AM
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#7 (permalink)
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Join Date: Aug 2005 Location: Calgary, AB.
Posts: 345
| Re: Starting Exjade
Interesting why your iron in liver is so high if you dont transfuse.
Personally I would recommend going in once a week for I.V Desferal. It is MUCH MUCH Better then Exjade, and since its I.V you could get away with only once/twice a week and safer for you.
I was on Exjade for over a year and it damaged my liver/kidneys and did nothing for Iron. Went back on Desferal and now my liver and heart are doing very well, my doctors were extremely pleased with the results.
Desferal = Life!
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Be the change you want to see in the world.
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August 18th, 2010, 01:00 PM
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#8 (permalink)
| | New Member
Join Date: Oct 2004 Location: Toronto
Posts: 1
| Re: Starting Exjade
I've been advised to take Exjade as well....I am thal intermediate.
Neel, if you don't mind me asking, what type of tests were done ongoingly to monitor liver/kidney function? I get blood work every 3 mos.
Were your liver/kidney functions normal prior to Exjade?
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August 24th, 2010, 11:56 AM
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#9 (permalink)
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Join Date: Aug 2005 Location: Calgary, AB.
Posts: 345
| Re: Starting Exjade
I did blood work and urine tests monthly.
Every 3 months is too long, for the 1st year it should be done monthly. Exjade could damage organs quickly and 3 months might be to long.
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