Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: rutuja2000 on April 08, 2007, 12:26:18 PM
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hi friends
hi friends,
I am here to know about the side effects of exjade, kelfer, desferal and other iron chelation drugs
so friends help me for that
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Hello Rutuja,
You can find the side effects information in other posts as folows
http://www.thalassemiapatientsandfriends.com/index.php?topic=306.0 - Exjade
http://www.thalassemiapatientsandfriends.com/index.php?topic=644.0 - L1/Kelfer
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thanx narendra.
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I see that this is an old topic, but usefull :wink
I have very very bad side effect from Desferal - very low blood presure about 65/90, last month i collapssed my blood pressure was 55/ 75. No one pill can help me, food too.
Now i think i have one more side effect if this is possible to be from DFO - i cant sleep, even when im very tired.
Is it possible to be from the Desferal?
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I'm not sure about everyone who uses Desferal, but for me Desferal has been the best chelating drug in the world, I started at two years and a half old and my sister at a younger age and so far we haven't experience any side effects as of yet. But I heard there have been side effects to some pple who tried using it. You could try the two other chelating drugs which is more convenient as it is an oral drug, no needle prick or pain no hassle............... :wink
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I have also, as Tedi, noticed that desferal lowers my blood pressure a little and that makes heart palpitations rise. I am talking about 80 pulses with ferriprox only and this rises to 90 with desferal and ferriprox together. Because of that, I have lowered the desferal dosage to 5 vials each time - while some years ago I took 8-10 vials per time and that presented with some problems: stomach ache, low pressure, palpitations. That happened only with desferal, when I was not on desferal those symptoms disappered.
So from what I personally have experienced, I concluded that when side effects appear one has to reestablish the dosage and of course, if one is "clean" one must not overdose oneself.
Lena.
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Thanx GOD , i never experienced any side-effect to Desferal and Ferriiprox (AKA Kelfer/Deferiprone) ( quite lucky i m in this case ) and never tried Exjade. :)
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Thanx GOD , i never experienced any side-effect to Desferal and Ferriiprox (AKA Kelfer/Deferiprone) ( quite lucky i m in this case ) and never tried Exjade. :)
You are very lucky :cheer
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Mayb... Yep i m..... i m lucky in a few cases only , otherwise i have been through a very rough patch .. mayb i m lucky in this case bcoze i like trying new medicines :grin ... hummmm .... desfeal and Ferriprox is sumting that work's for me really well , and my Fe levels drops from more than 9000 to 1000 in only one year ( may 27 2008 to may 25 2009 ) soo it really suit's me ad that's wat my doc won't to turn me on Exjade bcoze this combination (Ferriprox and Desferal ) is working fine for me ... :) hoping the same for you too , Best Of Luck :goodluck
Best Regards
Umair
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Do u mean that ur doctor can choose what chelation to give u for free?
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hahaha.. noop, i mean to say that when my Ferritin reached 1000 then i asked my doctor that now i want to move on exjade and she replied if this combination is working fine for you then why do you wana change this .... i was consulting to her bcoze i was feeling tired of doing desferal so she reduced my desferal dose now i have to do desferal only Blood Transfussion ... i wasn't asking for free, infact i use my own desferals and ferriprox on my own .. never tried to get desferal or any other thing to my thal center or to my doc.. i was just consulting her to adviice me Exjade so i bcome able to buy it from Novartis , but she convinced me to stay on ferriprox and desferal .. it was nothing related to free or favour like sumthing ... :) i hope i explained it well .. :)
Umair
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Yes yes now i see.I thought your doctor is free to give you what she/he wants.
In Bulgaria who wants to take ferriprox have to buy it, for exmple in Greece i think /Lena can say for sure/ all chelation are free, and the doctor can decide what to give the patient.
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In Bulgaria who wants to take ferriprox have to buy it.
Same here ,
in Greece i think /Lena can say for sure/ all chelation are free
here in pakistan some NGOs, thal centers , and hospital providing Desferals for free to the patients who want it free, only desferal not all kind of chelation stuff ... but in my case i have to buy these (desferal and Ferriprox ) on my own .. all i have to do is a Doctor's prescription ( only for ferriprox ) .. i can get desferal for free if i want bcoze my thal center is also provdinng free desferal to many patients but my Father decided not to take desferal Free ... Ferriprox is sumthing that is not availabel for free to anyone here , you have to buy it on your own ....
all i wanted to my doctor was to change my treatment planto avoid needles for desferal but now its ok bcoze desferal is only for one day , only on Tx day , and its a big relief for me :whew .... :) my doctor advice me and i m an obedient patient so i follow all the prescription of her , the advice that i m trying to avoid and not to follow is Hep-C treatment , that's wat i was really worried to .. but its okiey now as my test Reports related to Hep-C shwoing improvemnt and came really good .... :)
Best Regards
Take care
Umair
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You are right, Teddi. In Greece we do not buy anything on our own:desferal, ferriprox and exjade are paid by our health insurance system and we only get a prescription by the doctor. We also get needles, pumps and everything for free, our insurance pays for them, too.
Lena.
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You are right, Teddi. In Greece we do not buy anything on our own:desferal, ferriprox and exjade are paid by our health insurance system and we only get a prescription by the doctor. We also get needles, pumps and everything for free, our insurance pays for them, too.
Lena.
:clap