Poll: Which iron chelator do you use?

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Offline Eponine

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Re: Poll: Which iron chelator do you use?
« Reply #30 on: April 02, 2006, 11:48:29 AM »
No. Think that option is mostly for cancer patients. No thal here in Singapore that I've heard who has this mediport. Not that extreme. So, does that mean that aspect of treatment here sucks? I know someone who has a ferritin level of 9000+. She was the one who brought it up to our doctor about the mediport, which we call portacath but so far no news about the development. Think we are mostly worried about the care and maintenance of the area.

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Offline baris

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Re: Poll: Which iron chelator do you use?
« Reply #31 on: April 06, 2006, 10:15:26 PM »
I use only desferal, because my doc had said `it's the best at a long time'
My ferritin level is now 1603.
I'm 60 kg.
I use 5 vials at a time.
and I'm trying at least 20 times a month but it's hard.
I should motivate myself much more.


I think this will be helpful for us.
A study is released in 1996 by A. Piga et al. which summarizes patients who take desferal at least 225 times in a year have longer life than others. I read this statement Dr. Androulla Eleftheriou's book.

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Offline jzd24

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Re: Poll: Which iron chelator do you use?
« Reply #32 on: April 07, 2006, 01:13:28 AM »
These posts have been very interesting. I'm wondering about the antibiotic/desferal thing. Has anyone else heard that you are supposed to stop taking desferal when taking antibiotics? I'm taking some right now and I'm really curious about this. Thanks, Jean[/size]

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Offline SalD

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Re: Poll: Which iron chelator do you use?
« Reply #33 on: April 08, 2006, 09:54:52 AM »
Hello Archie,
ICL670 is more commonly called Exjade, so you might like to look at the posts from people who are currently taking it.  The reason you might not have had a reply yet is because most people would not have heard Exjade called ICL670.  Good luck with your decision!
SalD.

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Offline Benjamin

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Re: Poll: Which iron chelator do you use?
« Reply #34 on: April 11, 2006, 09:27:50 PM »
Hello everyone;

          :smile2 I started my Exjade today, April 10th, 2006. 3 (500mg0 dilutable tablets a day, I dissolve them in the water and take them at 7am everyday. Strange as it may seam I had no reactions to the 1st dose, I am glad of that too.  :yahoo

                             from Benjamin Woffindale "Thalassemia Major Patient"

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Offline Andy Battaglia

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Re: Poll: Which iron chelator do you use?
« Reply #35 on: April 11, 2006, 09:55:04 PM »
Hi Ben,

Great to hear that you're on exjade!  :biggrin  I know quite a few people on exjade and so far the only side effects have been a temporary skin rash that goes away after a week or so and some stomach discomfort and diarrhea, but not serious. Nothing much to complain about compared to the side effects of other chelators.
Keep us posted on your progress.
Andy

All we are saying is give thals a chance.

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Offline Danielle

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Re: Poll: Which iron chelator do you use?
« Reply #36 on: April 12, 2006, 12:09:28 AM »
Does is really go away, Andy?  The rash from the Exjade just appeared ALL OVER my body yesterday.  It's so itchy and I look like I have mosquito bites covering my legs, arms, stomach, chest, feet, and hands.  I look horrible!  :wah 

My doctor told me to lower the dose back down to 1000mg.  I was taking the full dose (1750mg) for two days when this happened.  I was so happy for a few weeks thinking that I wasn't getting any of the side effects, except for some stomach issues, and now this happens.   :(

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Offline Andy Battaglia

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Re: Poll: Which iron chelator do you use?
« Reply #37 on: April 12, 2006, 12:18:41 AM »
Danielle,

Everyone I know who had the rash had it for no more than ten days. I think 1750 may be a bit too high a dose. That seems a little high considering your body size and may be the reason the rash is so bad. I don't understand doctors. Why start out with a high dose? This is the same problem people find with L1. The dose is too high to start and they get stomach trouble. If they start on a lower dose and gradually work up to the normal dose their bodies have a much easier time tolerating the drug. I hope the lower dose works out for you and be patient with the rash. It should disappear soon.
Andy

All we are saying is give thals a chance.

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Offline Danielle

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Re: Poll: Which iron chelator do you use?
« Reply #38 on: April 12, 2006, 12:44:52 AM »
Andy,

The doc actually started me out on 1000mg.  I took that for a week, and went to 1500mg.  After about another week of that, I went to the maximum dose, which is 1750.  I took that for two days, and then I woke up with the rash all over my body yesterday.  I called the doc to tell him about it yesterday, and he told me to go back down to 1000mg for a few days and see if the rash goes away.   :dunno

My entire body is covered and it itches so badly.  I really hope it goes away, because I don't want to have to stop taking the Exjade.   :(

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Offline mudslinger

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Re: Poll: Which iron chelator do you use?
« Reply #39 on: May 04, 2006, 12:36:46 PM »
hi! i'm on L1 (since two weeks ago), and it's better than poking myself i think. but the side effects were terrible for me, but i'm coping now.

my ferritin level is really high, like 7700+ so i really should take some action to lower it.

another down side to it? the price.  :( it costs like 6.50 malaysian ringgit, or about USD 1.80 per tablet which means i'll have to spend a lot on it....

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Offline Andy Battaglia

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Re: Poll: Which iron chelator do you use?
« Reply #40 on: May 04, 2006, 09:03:51 PM »
This often happens when starting L1. A lower starting dose can help avoid this, but it does sound like your body is now adjusting.
Andy

All we are saying is give thals a chance.

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Offline marionetteskies

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Re: Poll: Which iron chelator do you use?
« Reply #41 on: May 10, 2006, 06:39:24 AM »
Hi, I am new to this website and I am glad to have come across such a supportive group of people. I have Beta Thal and I've been using Desferal for about 11 years now. My doctor finally put me on Exjade when it first came out as a trial. The first dose was tolerable, as I only experienced mild nausea. I used 4 500-mg tablets everyday for two weeks straight until I caught a fever that may or may not be related to the use of Exjade. My doctor told me to refrain from using Exjade until the fever goes away. When it finally went away, I started taking the Exjade again, but I started to experience very strange adverse reactions that I could not find in any medical journal. I felt nervous and anxious, among other things. When I later told a nurse about my reaction, she basically told me that I had hallucinated. I was shocked to hear that an iron chelator would make me hallucinate! I was terrified, so I talked to my doctor and he told me to get off the Exjade for a while until the symptoms go away. I didn't understand why I had such strange reactions to the medicine. So that was back in November of 2005. I'm now back to poking my stomach with a thumbtack needle, which is just hard on me since I'm running out of good, fatty spots on my tummy to poke myself. Like other users of Desferal, I find it difficult to comply with my chelating regimen. I need my Exjade!

I'm just glad that I can finally find out about other Thal patients on this website, since I've tried looking for online support to no avail. Thanks for maintaining such a helpful place for us folks! Hopefully, I will be able to use Exjade again. If anyone has any information regarding my strange reactions, please let me know.

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Offline sahil

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Re: Poll: Which iron chelator do you use?
« Reply #42 on: November 06, 2006, 03:02:57 PM »
hey all,

I am on combination therepy of Desferal and Kelfer......I take 3 vials of Desferal and 6 Tabs of Kelfer everyday for 4-5 days a week.....
My formula for living is quite simple. I get up in the morning and I go to bed at night. In between, I occupy myself as best I can.

 

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