oh wise ones..i need your advice

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Offline red

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oh wise ones..i need your advice
« on: December 13, 2007, 11:36:10 AM »
hi everyone~!
i was just talking to Sajid, and he said that i should maybe post this topic on here and get yall's help..so..here i am...

my desferal is 5 vials running for 14 hours for 7 days a week, and my feritin is like 1900 but i think its higher now....

is that too much desferal??? :dunno

also, i know i've posted on here before about exjade, but its been suggested to me that maybe i should try it........i'm still scared though..

Re: oh wise ones..i need your advice
« Reply #1 on: December 14, 2007, 11:11:56 AM »
Hi Red,
Im not sure about the desferal bit,but all i can say is im on exjade & have been for about a year now,and i much prefer exjade now to desferal.I had real problems with desferal coming out in hives & bruises all the time that would take weeks if not months to clear up.
exjade i find more convinent,pop 2 tabs into juice each morning to dissolve and then drink it only once a day.Beats needles any day!but thats just my personal opinion.
I had only a few minor side effects,that were nothing really.So dont be scared about taking exjade!

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Offline §ãJ¡Ð ساجد

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Re: oh wise ones..i need your advice
« Reply #2 on: December 14, 2007, 01:29:57 PM »
Hi red,
I forgot to ask if you are taking Vitamin C with your Desferal? It really increases the efficiency of Desferal.
اَسّلامُ علیکم Peace be Upon you
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Offline red

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Re: oh wise ones..i need your advice
« Reply #3 on: December 14, 2007, 10:39:38 PM »
i used to up till when i was 22..but then i went to this other hosp who was really well known for thal...and they said that it wasnt good to take vitamin c..so i just listened to them? :dunno

i dont know you guys..everyone says one thing or another...i so dont know whats going on anymore..and to be honest with you..i have a feeling i'll never know whats best anywayz with this whole stuff..since so much of it is 'covered up' by the government and so forth...
am i being cynicial about this again??
oh well,
best regards,
with :heartred
red

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Offline Andy Battaglia

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Re: oh wise ones..i need your advice
« Reply #4 on: December 14, 2007, 10:56:41 PM »
If you are taking desferal you should also take a small amount of vitamin C along with the desferal, as it frees up more iron for the desferal to chelate. However, do NOT take large amounts of C if you are thal, as it can release too much iron into the bloodstream where it can cause iron clumping in the heart.
The suggested amount of C is 100 mg at the start of desferal and another 100 mg half way through. Do not exceed 250 mg C daily if you are a thal major.
Andy

All we are saying is give thals a chance.

Re: oh wise ones..i need your advice
« Reply #5 on: December 15, 2007, 01:31:22 AM »
also i thought if any thals have or had heart problems they are not to take vitamin c either.is that correct? and i heard that thals also shouldnt have too much lemon or lemon juice as if you have or had heart problems its not good for the heart also? dont know if this is correct,this is what i have been told at my hospital.

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Offline §ãJ¡Ð ساجد

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Re: oh wise ones..i need your advice
« Reply #6 on: December 15, 2007, 05:01:06 AM »
Vitamin C increases the availability of Iron in the blood stream from the concentrated Iron stored in the organs like the liver and spleen; therefore Desferal can easily react with it and remove it. However, using too much vitamin C releases too much Iron which can mobilize to the heart and damage it. So, we should be moderate in the use of Vitamin C. You should not exceed 250mg per day if you are taking Desferal every day and avoid taking it on the day you are skipping Desferal. Ever since I started to use Vitamin C, I can um...see the difference... :blush (If you know what I mean)
اَسّلامُ علیکم Peace be Upon you
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Offline red

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Re: oh wise ones..i need your advice
« Reply #7 on: December 15, 2007, 01:35:29 PM »
thanks everyone for your thorough replies!
i think its too complicated..so i'm just going to not take the vitamin c..
call me neglegtful but..

also..i think i really have nothing to loose now (well except my existance)..
so i'm just going to maybe start taking exjade.

i mean..hopefully within the few couple of years coming up ..
these demons people will have come up with healthy alternatives that are atleast 99%..
but untill then..i guess i'll just chance it with the exjade..

i like the pump and all.
its just too tedious

thanks everyone .. :chill

 

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