Exjade

I'm so excited  Exjade will be soon available here in the Phiilippines and I'm dying to try it out already, just hope that I would not have any side effects and will be a good alternate when desferal is not available.   There will be a product launching of Exjade come March 2 and hope I can afford it and be able to buy it ASAP!

Congratulations Lyanne!

I wish you all the luck on getting Exjade and hope that it will suit you perfectly.

Take care, Peace!

Hi all

I have been a bit lazy lately hehe. My doc has increased the dosage. I now take 4 big pills a day. Its like swallowing sand hehe


Take care

Wow, taking 2 is already like hell to me. But well, at least it is better than desferal 

I'm so excited  Exjade will be soon available here in the Phiilippines and I'm dying to try it out already, just hope that I would not have any side effects and will be a good alternate when desferal is not available.   There will be a product launching of Exjade come March 2 and hope I can afford it and be able to buy it ASAP!

The highest side effect you probably get is increase of liver enzymes and also serum creatinine. The price what i heard is RM 2800 (800 USD) for a bottle of 500MG 35 tablets.  I am not sure too as i am under the free trial program.

Thanx Sajid and Tifosi! I really hope it's not that expensive or else I couldn't afford to buy one. I would update you on how much is the selling price is, when the product have already been launched and available in market. will definitely tell you how is it working for me. I still hope it would work for me

Hi!  I'm new to this site.  I've been on Exjade since Sept 2007.  My ferritin went down once only in the beginning and then has continued to rise.  What am i doing wrong?  I'm already taking the maximum dose for my weight.  Any help would be appreciated.

Hi Polly and welcome,

What dose of Exjade are you taking, mg/ per kg body weight?

30mg

Hi Polly,

Your experience follows the pattern of many other patients who have also reported an increase in ferritin after starting Exjade. Most also report that this levels out and begins to decrease after 6-12 months. Since Exjade is still fairly new, doctors are still learning what the effective dose is for lowering ferritin. Although in most places, the maximum dose is 30 mg/kg, some doctors in the US, including Dr Vichinsky are using doses as high as 40 mg/kg in some patients. This is more likely to be used in patients with severe iron overload. I would suggest to give it a few more months at 30 mg before making any changes.

It's around RM2800-RM3500 for 28 tablets 500mg pack in Malaysia.

Thanks Andy,  My ferritin has gone up to 2600.  Tomorrow I'll have new results.  This ferritin level is high for me and my previous Dr said that when it is above 2000 that is when damage occurs.

Got my results 3300. I've gone back onto desferal.  This is the second time i've tried exjade.  I guess this drug isn't for me!  What do you think of the other tablet?  I'm worried about side effects.

Hi Polly,

Just out of curiosity, what's your desferel now going to be? Like you I have seen increases in my ferritin    However, my problem is not as severe as yours.  Im sorry to hear that you're back on desferel, then exjade is not for everyone.  All the best with your treatment and in the future.

Nick

i've been put on 4g subcutaneous.  Its okay.  I kind of feel relieved to be back on desferal.  I guess it's better the devil you know!

On the subject of Exjade and how long it takes to show a reduction in ferritin in some patients.

I talked to a friend in Hong Kong this past week who was on a one year trial of Exjade and continuously saw her ferritin rise. After the trial, she was finally able to get some compensation to help cover the costs, so she resumed Exjade. Since her first worrisome year on Exjade, in which her doctor told her to be patient, her ferritin has dropped in half, from 7000 to 3500. It took some time but she eventually had a significant reduction. Her doctor had told her what we have heard often. Initially, the iron being released from tissue and organs can cause an increase in serum ferritin but this will eventually correct itself. Serum ferritin is not the ideal way to measure iron concentrations and a liver scan would be of much more value for this purpose.

I would recommend that patients have patience when using Exjade.

ferritin at 7000 is extremely dangerous.  I do believe that Exjade was clearing iron from my tissue as my hormones became regular but i can't risk damage to the heart.  I've got 2 children!