Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Canadian_Family on November 12, 2008, 11:26:39 PM
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Dear friends,
I guess everybody knows that, but our recent experience with my daughter highlighted the importance of water, if you are taking exjade.
She was de-hydrated and the main reason, she refused enough water with exjade. If you are taking exjade than please increase your water intake by atleast 4 glasses of water (i.e. more than your routine intake of 6-7 glasses or more if you live in hot weather). Her kidneys were protesting (side effect of exjade) and the body was not responding to the IV fluid, she developed Edema in her legs and arms.
Exajde will develop slow de-hydration and kidneys will take the tool.
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Canadian Family,
Thank you for this very important information - I hope that everyone will take note. There are days, since beginning exjade, when my son feels he needs a lot of water - he feels very thirsty, I will make sure that he does not go without water for very long.
I am so glad that our little princess is doing well, we have all been thinking about her and praying for her over the last few days. I am so happy that she is home. Many hugs and kisses to her :kiss :kiss :kiss :hugfriend :hugfriend :hugfriend
Sharmin
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Thanks Canadian family for sharing such an important information, these observations are very important for new users. Welcome back home :wink
manal
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Welcome back home :)
It seems like there are more and more things to look after once you start Exjade,this is scaring me a little bit,i hope everything will turn out fine when my daughter will start Asunra.
Zaini.
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Hi! C. F.,
Oh my God you know what that happened to me last year when I got sick had edema and my hema couldn't figure out why I had edema including my face.But that time I have developed an upper respiratory infection so it wasn't really the main problem my hema have been concentrating on. Thanx for clearing that up for us..... :hugfriend
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Hi CF ,
its nice to hear that your daughter have recovered , she is fine now and doing well day by day ... thanx God she is fine now .....
its realy important note that you mentioned here , bcoze some people (diabetes patients) even can't think about that it could be also bcoze of Exjade (while using exjade )( at-least i can't think bfore reading this post , soo thanx ) that. i feel thirsty when my BSL touch's high marks and if i refuse to take water while i feel thristy bcoze of High Sugaar level that punchs me realy hard, soo it is realy difficult to figure out the reason of feeling thirsty, soo both reason should remain in notice ...
Best Regards
Take Care
Umair
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Umair,
Thanks. I thought of that too, but the thirst only happened once or twice during these last few months. I will have the doctor check his fasting glucose levels soon. Is there anything else that we should test for?
Sharmin
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Hi Sis,
here are some other symptoms....
thirst , sometimes it happened to me after meal , you are drinking alot of water but thrist will remain there and it will dispear after a few hour to meal, it happen's bcoze of hike in BSL after meal ( when BSL come to near normal ranges)
Pain in legs , same its also ahppen when BSL touch's the high marks.
i feel like fever iinside the body and right on the back side of neck even in winter, sometimes after meals bcoze of high BSL.
Fade view , its also a sign of high BSL , when it happen's i didn't read the slides on tv and also feel difficulty to recognize the people to a short distance ( 30 35 feets )..
if i m not wrong , you are thinking to check BSL , its good to keep record and keep good track of everything, but, Little a is definitely fine believe me , i m saying this bcoze i have several reason in my mind here are the main reassons .
there a several reasons why i m saying this ,
he is too young for it,
he were completely in-touch with his doctor,
he were regular with the treatments,
his iron is in complete controle since he was veery Little A ( since he started with Blood Tx) and main reaon of diabetes in thals is Iron .... and few more reasons
soo, dont worry about it , but to kill the doubt abt it , you may check his BSL .. but more efficiant test is Hb1Ac . it gives you the average of sugar levels of your body within past few weeks . Andy please correct me abt tests if i m wrong ... ill be happy ...
soo he isn't having that prob, wat u r concerning abt . soo please relax he is fine ad will remain in good health and form to play ice hockey ....
Best Regards
Take Care
Umair
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Hi C-F
Recently I came to the same conclusion as you. Some days I must force myself to drink enough water. I am still not the most brave kid, but I am doing my best.
What is BSL?
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Hi Peartree girl,
BSL is blood sugar level :)
I think drinking enough water is a challenge for all of us :biggrin
Sharmin
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Yes, that's true. Though those 2l water each day isn't great for your body.
My belly will fight with me when I don't drink enough water ;)
Aha, I gave 7 tubes of blood tuesday. They will also check my bsl e.g.
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Umair,
Thanks for that message - since last year I freak out at the thought anything more happening to my "little A" :scared :scared
But it is important to be on top of things and to do all necessary tests, his iron levels did explode for a little while last year.
Thanks again,
Sharmin
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Your welcome Sis ,
i have mentioned somewhere on this site that Drinking enough water also help's to keep BSL controled ... and i think its thin's the blood keep you away to the blood clotting in body , i thin , its also controle/normalize the B.P ( Blood presure ) ... so there are more benefits of drinking water than the suffering of drinking water .. you may set your self to drink water with the every hourly bell , it will made easy to drink at-least 12 glass of water a day ....
Take Care
Umair
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Umair,
Thanks bro, I'll make sure that little A drinks his water:)
Sharmin
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Hi dear
I'm new with Exjade and I want to start with it, but I don't no anything about Exjade, how I can Take it and another thing please I want your help and I will be thanks
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you can conect with me on this E-mail ( qiji_soran@hotmail.com )
and I will be thanks if any one send methe Exjade manual user
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Hi Qiji,
:welcome to the Forum , i hope you will find all the answers of your concerns . and you will like the people of this forum . you will find them realy caring loving and helping ... its nice to meet you qiiji and hope that you will like to stay with us as well ... here is a link its the exjade manual/ leaflet , it will help you to understand using exjade ..... that file is attached with my post just see below and download . you need to have adobe acrobat reader to view this document . if you dont have that software then tell me i will try to find other ways to provide this file in another format ....
Best Regards
Take Care
Umair
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thank you Umair thanks for your help, I have ask you can I don't use Exjade every day
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Hi Qiji ,
exjade is once a day ,daily oral chelator , i dont know abt your dosage so couldn't say anything abt it .. you have to consult a doctor near u before starting exjade , its neccessory to find out and have an eye to examin that if exjade is leaving side-effects oon you ... it will b good to start with low dose and then move towards hig doses slowly . to avoid any side-efects , or minimize the chance of side-effects .... also please let us to know abt your bod weight and age .. that is wat ,which will help to get right dosage details for you .....
Best Regards
Take Care
Umair
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Thanks Umair
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its a little piece of informationn, here is the link, to read complete document ....
http://www.drugs.com/pro/exjade.html?printable=1
Exjade Dosage and Administration
Starting Dose
The recommended initial daily dose of Exjade is 20 mg/kg body weight.
Maintenance
After commencing initial therapy, it is recommended that serum ferritin be monitored every month and the dose of Exjade adjusted if necessary every 3 to 6 months based on serum ferritin trends. Dose adjustments should be made in steps of 5 or 10 mg/kg and should be tailored to the individual patient’s response and therapeutic goals (maintenance or reduction of body iron burden). If the serum ferritin falls consistently below 500 mcg/L, consideration should be given to temporarily interrupting therapy with Exjade. Doses of Exjade should not exceed 30 mg/kg per day since there is limited experience with doses above this level.
Administration Instructions
Exjade should be taken once daily on an empty stomach at least 30 minutes before food, preferably at the same time each day. Tablets should not be chewed or swallowed whole. Exjade should not be taken with aluminum-containing antacid products. Doses (mg/kg per day) should be calculated to the nearest whole tablet. Tablets should be completely dispersed by stirring in water, orange juice, or apple juice until a fine suspension is obtained. Doses of <1 g should be dispersed in 3.5 ounces of liquid and doses of ≥1 g in 7.0 ounces of liquid. After swallowing the suspension, any residue should be resuspended in a small volume of liquid and swallowed.
Your welcome Qiji ,
Best Regards
Take Care
Umair
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Qiji,
Are you taking Exjade under a doctor's supervision? All chelators need to be used under a doctor's supervision because all chelating drugs have side effects in some patients. With Exjade, serum creatinine needs to be checked regularly to make sure it is not harming the kidneys. Also, 20mg/per kg is a maintenance dose and won't lower ferritin, while 30 mg/kg will lower ferritin levels. It should be taken daily. Taking lower doses won't do much good at all.
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Qiji,
As Umair has said, Exjade is used daily (as per the documentation that Umair has provided). It should be taken under the supervision of your doctor and your doctor should also control your dosage. Exjade is usually started at a dose of 20mg per kilogram of the patient's body weight, if this is well tolerated then the dose is increased to 30mg per kilogram of the patient's body weight. My understanding is that exjade is effective at 30mg/kg 7 days a week, therefore I don't know if it is good enough to take it only a few days a week.
Also, any patient on exjade MUST have a blood test (cbc, metabolic panel, ferritin) and urine test done every 3 weeks. If you are going to use exjade and desferal in combination - this MUST be prescribed by your doctor and the patient MUST be followed very carefully.
My 10 year old is on combination exjade daily/desferal 5X week - therapy and he is being watched very carefully. So far things seem to be going well, and his ferritin seems to be dropping (we will know for sure at his 6 month follow up). But I must stress that a research team in Oakland and our doctor here watch him like a hawk because he is on this treatment as part of a trial. The researchers in Oakland are constantly keeping in touch with me via phone calls and emails, the doctor in Oakland has called me at home to make sure that we are doing well.
I hope that this information helps, best of luck with your treatment,
Sharmin
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thank you Andy and thank you Sharmin
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thank you Sharmin for a good information
But I'm dont take it by myself my doctor said to me to take it like that.
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Qiji,
I am glad that your are taking Exjade under the guidance of your doctor. Are you just beginning Exjade? If so, then this may be your doctors way of starting you off - with this low dose to see how your body reacts. However, in the long run such a dose is not effective so eventually I hope that he will increase it.
Best,
Sharmin