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Author Topic: Exjade users advice  (Read 11176 times)
Canadian_Family
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« on: May 15, 2008, 10:14:17 AM »

Hello,

I am not sure if you would already knew but all exjade users should monitor the colour of their stool. The blackish brwon colour indicates that iron is successfully excreting from the body. Being regular is very important when using Exjade.

Regards
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madisonsmom
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« Reply #1 on: June 02, 2008, 08:55:22 PM »

Thank you.  We were warned about orange urine but that's it.  We are starting Madison (just turned two) on exjade as soon as we get our shipment from the drug company.  Any other hints, warnings or what to expect for little ones would be great.  I'm really worried as Madison is not verbal and won't be able to necessarily tell me how she's feeling.
Be as graphic as you think I should be warned about. She's in diaper.  Do you think I will experience blow outs?

Thanks for sharing, Michelle
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Andy Battaglia
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« Reply #2 on: June 03, 2008, 12:21:49 AM »

Some patients experience a skin rash for 7-10 days when first starting exjade. It usually passes after that time. If the rash gets bad, exjade should be reduced in dose or stopped until the rash has cleared. A smaller starting dose is advised if this is a problem. Many patients also complain of some nausea at first. If her tummy hurts, it's probably the exjade.  I have also heard that some do get runny, so her diapers might be messy. It does seem to help if the starting dosage is low and is slowly raised until the final dosage is reached.
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Andy

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Canadian_Family
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« Reply #3 on: June 03, 2008, 03:14:35 PM »

Besides what Andy has described, please note for mood changes. Don't expect the urine to be orange (Orange urine is expected for Desferal users). Exjade users excrete iron thorugh bowl movements, watch for the stool color, it should be blackish brown if exjade is working fine.

Try to give lots of liquids to Madison, it helps.
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Regards.
madisonsmom
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« Reply #4 on: January 06, 2009, 08:26:30 PM »

So Madison's been on Exjade for 6.5 months now and her Fe was 1700 last month! I'm very frustrated. It was 1100-1300. The doctor asked me to give it a chance before starting with any IP6 or anything but I'm done waiting.  I'm going to get her IP6 and make sure she gets a zinc supplement.  I'll give it to her with meals to help prevent iron absorbtion.  I'm thinking 1000mg daily as she is 26 pounds (12 Kg)  Does that make sense?  She takes 250mg of Exjade daily.  Thanks for thoughts and opinions.
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Sharmin
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« Reply #5 on: January 06, 2009, 08:37:00 PM »

Dear Madison's mom,

When taking exjade ferritin levels may appear to be high for some time because exjade removes iron stores from tissue and spills it into the plasma.  Once the iron is excreted the SF levels will be lower.  Serum ferritin level of 1700 is not bad 6.5 months after starting exjade.  Is Madison getting 30mg/kg of exjade? 

IP6 is very helpful to thals.  Although it may not significantly lower ferritin levels it does bind with free iron and prevent oxidative damage to organs.  I would therefore recommend IP6 to all transfusing thals.  I give my son 2 caps of IP6 2 to 3 times daily.  I began with two caps once daily and increased it over time.  There aren't any side effects and the benefits are very significant. 

Best of luck,

Sharmin
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Sharmin
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« Reply #6 on: January 07, 2009, 05:21:42 PM »

hello there,

can someone tell me what IP6 is ?

i dont have thal , but i do get transfused often, every 2 -3 weeks for my CDA

sharmin you recomended , ppl who get transfused should perhaps go on it ... do you think i should too?
iM not sure i have heard about it ?
I live in Australia , 22 female .

thankyou
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Sharmin
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« Reply #7 on: January 07, 2009, 05:59:31 PM »

Dear Rogue,

IP6 should be helpful for anyone being regularly transfused - it will protect your organs from oxidative stress. 

IP6 is actually beneficial for everyone - some studies suggest that cancer survivors benefit greatly from the use of IP6.

Sharmin
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Sharmin
Andy Battaglia
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« Reply #8 on: January 07, 2009, 10:21:44 PM »

At Madison's weight she should be on about 375 mg Exjade daily. It won't do much at the current dose. Also, make sure she drinks plenty of water and don't use anything metal to mix Exjade with.


Rogue, IP6 is also known as phytic acid or inositol hexakisphosphate. It is from the B family of vitamins, is a natural product found in the bran of grains and also found in every cell in the body. It's value as an antioxidant and also as a supplement to chelation have been seen in thals who have been regular users. Its ability to prevent the damage iron does in the cells is of benefit to anyone dealing with high iron.
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Andy

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Canadian_Family
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« Reply #9 on: January 08, 2009, 08:40:42 AM »

Andy is right about the dosage. My daughter was 15kg when she started taking 375mg.

I have had concerns with the exjade prices recently, the monthly bill of exjade for my daughter is $986 which I calculated using Pakistan Rupees as Rs.65,450 approx per month. I know exjade aka Asunra is available in Pakistan, what is the price there.

« Last Edit: January 08, 2009, 11:08:59 AM by Canadian_Family » Logged

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Dori
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« Reply #10 on: January 08, 2009, 09:59:23 AM »

Yesterday I found a new information leaflet by Exjade (but they wrote as date July 2007; i believe it's a typo). They have changed some things, but still not 'the water drink issue'. I dont think they will ever put that in the leaflet.

OK, i really hate to tell you the price of my meds.
I received 6 boxes of 500mg and 6 boxes of 375mg = €4500  It is absolutely, absolutely CRAZY.
This is for three months, and it's paid by the insurance but it's still idiot.

Later I decided to not go to 40mg/kg of what my doc suggest. I will go to 30mg/kg and that's it (1250mg). And it's better to have the same dosage for a long time, i think.
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Zaini
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« Reply #11 on: January 08, 2009, 12:08:25 PM »

Canadian Family,

A box of Asunra containing 30 pills of 400mg will cost 5,763 rupees,and 30 pills of 100 mg will cost 1'440 rupees.

Let me know if i can be of more help.

Zaini.
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Alia
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« Reply #12 on: January 23, 2009, 12:34:55 AM »

is asurna the same is exjade zaini? and can u buy it with out a priscription in pakistan
alia
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Zaini
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« Reply #13 on: January 23, 2009, 01:05:49 AM »

Yes Asunra is the second name of Exjade in Pakistan,it's by Novartis,but no you can not buy Asunra with out a prescription in Pakistan.

Zaini.
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Waleed
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« Reply #14 on: April 28, 2010, 12:08:38 PM »

Yes Asunra is the second name of Exjade in Pakistan,it's by Novartis,but no you can not buy Asunra with out a prescription in Pakistan.
Zaini.

One can buy ANYTHING WITHOUT PRESCRIPTION in pakistan 
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Waleed
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