Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Sharmin on August 05, 2008, 05:58:14 AM
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My son began using exjade last week - Wednesday. He is also using desferal 5X week 12hr infusions.
So far things seem good - I haven't noticed any changes. He is getting a daily 500mg tablet - he weighs 26 kgs.
Should we be noticing any changes at this point? Change in stool color etc? So far we have not noticed it.
At what point do we look for rashes etc?
So far so good:)
Thanks all,
Sharmin
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Hi Sharmin,
I'm so happy for you :yahoo
Well, you should not worry about the rashes as they don't happen always in every case.
Everything should be smooth unless he complains of itching or upset tummy.
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Sharmin I am so excited for you.
Wish you both all the best
Lots of love
Cherie :woot
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Best of luck my friend :hugfriend
manal
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best of luck to you n your son sharmin :
i hope n pray that exjade will work alot for ur son ...
n u will find best results to it .... give a :high5 on my behalf .. wish you ...
bye
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Thanks everyone :ty
I hope that this combination therapy brings his iron down quickly.
Should his stool color have darkened by now? I'm not sure what to look for to determine how things are working.
Sharmin
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To Sharmin.
:flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
It will be alright.
Kathy
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Hi Sharmin,
Congratulations on starting the exjade. Since your son is on a combination therapy I don't think the colour of stool will change immediately. The iron excretion perhaps is going two ways now, i.e. through urine and stool. The colour of urine turns orange when using desferal and stool turns black/dark brown when using exjade. Your son since using both, chances are that you do not see a visible difference in the colour, this is just an assumption.
I sincerely hope the combination therapy works best for your son. Please keep us updated.
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Thank you for your encouragement and wishes - I am so touched :)
You guys are wonderful.
Canadian Family, it is true my son is on combination therapy so I may not notice the change in his stool so early. I have a few other questions for you - we are currently mixing his exjade in orange juice with calcium could that present a problem?
Also, my husband has been stirring his pill while it dissolves with a metal spoon and has even left the spoon in it while it was dissolving. I am wondering if it is okay to use metal while mixing the exjade because it is a chelator. Perhaps I am being paranoid...
Thank you very much for your help - your experience with exjade is very helpful. I hope that the combination therapy gives good results for my son - and we can help others with our experience.
Since beginning Rituximab his transfusion requirements have dropped considerably - I hope to eliminate the prednisone completely soon. Our last rituximab treatment is this Thursday. The doctor told us that his antibody levels were always very low, just high enough to cause some hemolysis but never out of control. My hope is that things settle down very soon. The decrease in tx requirement along with the aggressive chelation should reduce the overload very soon.
I am very nervous about the results of his MRI to determine his heart function and iron levels in his heart. We should receive them in another week or two. My little guy will need a lot of prayers :pray :pray :pray :pray :pray :pray :pray He looks well, and they are expecting things to be normal but I am still nervous.
Thanks again for your help friends,
Sharmin
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Exjade should be stirred with a plastic or wooden spoon and never put in a metal container or stirred with a metal utensil. The exjade will chelate the iron from the metal utensil and this will reduce its effectiveness, as it will already have bound with iron.
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hi sharmin,
i have been on exjade for over a year & a half now,one thing with the exjade & it may not be in every case but
sometimes you can go to the toilet more frequent then normal(bowel motion) sorry for the details everyone lol
and yes it can be a darker colour,sometimes i have felt very nauseaes also & do not mix with metal only plastic cup & spoon.
best of luck!
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Thank you so much for letting me know!
I feel so bad that we have been mixing it with a metal spoon! We will change that immediately.
Is it okay to have a ceramic or corningware cup? or is it best to use plastic? We have been using corningware.
I have noticed that he is going to the washroom more often.
Thank you for all of this useful info!
Sharmin
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also, is it okay if the OJ is 'with calcium' ?
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The glaze used with ceramics sometimes contain iron so that should be avoided. Glass or plastic containers are fine.
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also, is it okay if the OJ is 'with calcium' ?
Some Orange Juice brands do come with calcium added. Calcium is good for thalassemia patients in any case, so I don't think it is a problem, infact I think it is good.
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hi again sharmin,
i dont know about the calicum thing,perhaps andy can help with that answer,but for me i take exjade with just normal orange juice on its own & my doctor said or you can add the exjade with either apple juice or water.But ive been told with no other juices.
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Hi Sharmin,
I am so happy for you :hugfriend i hope this combination therapy will help bring his ferritin down.
ZAINI.
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Thank you Sydneygirl, Zaini, Canadian Family, Kathy, Umair, Cherieann, Andy and Manal :grouphug :grouphug
I think I'll stick to using regular OJ and plastic cups and utensils from now on :)
Thank you for your wishes and the wonderful advice.
Sharmin
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HI GUYS.
I thought I will share with you all how I got my Iron when I got very sick when I was 6/7yrs old.
My mother had "Nails in a bottle of water" ,soak them for few days then I was given the water to drink. I survive. :huh :huh :huh
That was in the early 1960 I am glad time has evolved, these days, there are other methods of treatment.
I know it was hard times I made it through because it wasnt my time to go.
I believe in destiny.
Kathy
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EYAKHHHHH...... ...........
wat a treatment .......
that was chelation therapy ??....
i will go for desferal.....
no matter how long time desferal take to infuse inn......
well try to avoid therapies like this one ...... :biggrin
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Kathy was that to give you iron or take out iron?
Yes we are certainly lucky that time evolves our technology.
It will get to the stage where subcut injections will be getting the reaction given by urmair.
Hopefully that is just around the corner for us all.
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oh dear Kathy!
I guess parents are always trying to do what they believe to be best for their kids.
Sharmin
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Hi Cherieanne.
I was severely anemic then ,I suppose it was to give me iron ??? ??? ??? ??? ???
Thinking of those hard times able me to appreciate the life ive got now.
in the sixties thal was unheard on the Island.
It is still not ,dealt with, many of the people from the Island died very young from stroke and other associated illness,eg lots of diabetese too.
Kathy
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I can understand the unknown. :rolleyes
Although I didnt have the nails, my parents will told to use ginseng and dad would take me to Tauranga where we would go to a place and be connected to a battery. I hated that as it scared the hell out of me. I think it was called electrophe therapy.
The idea was that the electricity from the battery caused a current that supposed to push out the iron. I was only 6 and cant quite remember why. Just the room with 6 to 9 people around this battery with lines connected to our wrists. :banghead
I am much happier with technology now but I appreciate what my parents were trying to do even if I hated it.
And yes it still is not well known today
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Indeed our parents want to see us happy and healthy all the time and will do anything no matter how odd it may be to make our pain less.
Well, development in science comes gradually and like you said earlier that the next generation will awe in disbelief that their ancestors had to use needles for their medicine.
Who knows there might be a "Pill" cure for Thal. once and for all.
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Yes :biggrin Wouldn't that be great that as we live, we are giving technology new ways to help the future and as our legacy, we leave answers for technology to make that pill :biggrin
That makes me feel great