Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: wong_s1988 on January 12, 2007, 09:53:28 AM
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Hey eveyone,
I've been on exjade for approx 7 months now and my ferritin is currently at 3368...Ii started at a low dose but now Im on the higher doseage but my ferritin's is starting to slowly climb up.
My doctor said that exjade sometimes doesn't work for some people and she said that I may have to go back to desferel for a while if my ferritin doesn't come down... :(
Has anyone else experienced this or heard of anything like this?
Feeling very down right now :wah
Xx Stacey
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Hi, Stacey. :)
I'm sorry you are very down right now. :hugfriend We are here for you whenever you need to talk.
I have heard that, also. Exjade doesn't work for everyone, and sometimes it will work and then stop after a certain time. I don't know why this happens, but it's been known to do that. :(
I hope you will be able to get your ferritin back down. :hug
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Hi Stacey,
What dose of exjade are you on now and how long have you been on this dose? My friend in Hong Kong was on an exjade trial there and her ferritin rose throughout the one year trial but the doctor kept telling her it would come down and that iron being removed from body tissue was showing in her ferritin levels. A liver iron reading would be a better indicator of how well the exjade is working. If you have access to ferriscan you can get an extremely accurate measure of liver iron. You can find ferriscan locations at http://www.resonancehealth.com/rh_findcentre--FindCentres
I think it may be premature to stop using exjade. You might also possibly consider doing what Danielle did and use desferal a couple times a week along with daily exjade. Talk to your doctor about this. Many doctors are not aware this is being done but the two drugs can be safely combined.
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hi stacey
the news on the exjade isn't great. my sons about to start chelation in a couple of months and im praying that exjade is going top be the new wonder drug so i dont have to inject him each night. he will be 5 soon and they have recommended i dont start exjade until at least 6. i'm scared though as it is new drug and i dont want him to be the guinea pig. any way i went to an interesting talk the other night about iron chelation and it seems that in manu european countries compination therapy is proving very effctive- desferal 3-4 times a week and an oral chelator every day. it seems that one works well for the liver and the other for the heart. anyway what shoutld transfused peoples iron levels be anyway?
stay positive
vic
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it seems that in manu european countries compination therapy is proving very effctive- desferal 3-4 times a week and an oral chelator every day. it seems that one works well for the liver and the other for the heart. anyway what shoutld transfused peoples iron levels be anyway?
That's what I've been doing. I take Exjade 7 days a week, and Desferal 4 nights a week. My levels skyrocketed for a bit, and now they are starting to come back down.
Every doctor seems to have a different opinion on what the iron level should be. My doctor likes to keep it below 1,000. :dunno
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Today i talked with Dr.hisham in the hospital regard the exjade he told me i sent many questions to the companey who made this drug and am waiting for the replay ...so just wait :impatient and count some sheep :sheep
:biggrin
khalifa
state of kuwait
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i'm on 30mg/kg for about 7 months now....I've had ferriscans of my liver done every 2 month and according to my doctor, all is well..
I mentioned to her that some of the thal patients were having combined therapy with desferal, but she didn't know about it, so i'll have to ask her to look into it..
Thank you every one so much for your support and i'll keep you updated (fingers crossed) :hugfriend
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Stacey,
As long as your liver iron levels are good, I don't think there should be any concern over serum ferritin levels. The iron in serum ferritin does not cause any harm to the body, unlike the iron in organs. The ferriscan is a much better indicator of how well your chelation is working than the ferritin test. As long as you don't show any new buildup of iron in your liver, I think you can relax.