Exjade

Hi Turbo215

Welcome to the group and thats great news about your Exjade not giving you any side effects....With the stomach aches you can try taking a antacid to help ease the pain...

I am on Deferiprone and have been on it for nearly 2 yrs and am doing quite well on it actually...The same goes with me..NO side effects what so ever...My ferritin has dropped dramatically in the 2 yrs I have been on it...My ferritin is in the low hundreds...

Take care good luck and speak soon
Smurfette

Antacid is not allowed to be taken with Exjade due to the Aluminium in the Antacid.  People need to avoid taking anything that has Aluminium while they are using Exjade

Hi, havent been so active lately(->at all ;) )


I recently started on Exjade. I have had all the signs(all over the body). Thank God, it is all over.

I dont know the effect yet, I will know later this week.

Now that I am off needles I feel like there is something missing. Maybe we dont miss it until it is gone

Take care
Kochi

Congratulations on getting Exjade! 

Now that I am off needles I feel like there is something missing. Maybe we dont miss it until it is gone

Take care
Kochi

As far as needles are concerned; I'll be glad to miss them right away!

Flower there is an antacid you can  take that doesnt have the aluminium in it..Its called Rennies and they are really good...all they are calcium and magnesium...

they will help with the heatburn...

HI Andy and Danielle, I thought I should write as to where our Rochester patients stand on Exjade. One patient is doing well and ferritin going down 100 points a week another patient is going up. He already threw away his pump and his mother is very worried, Is there any chance that exjade will not work on some patients? He has been on it for 5weeks. He takes 4 pills a day and the doctor said the most he could take is 6 pills a day. HE did not get a rash but is in the bathroom alot. I have been told that the iron does not bind in the urine but in the bowel. I told him to come to this site and seek some answers. Thank you for all you do. God bless you all. Love Lisa's Mom Shirley Cammilleri

Hi Shirley,

I know one patient who was on exjade for 5 months before her ferritin went down. It is all related to the dosage. Her dosage was gradually raised until the ferritin finally started to decline. The patient whose ferritin has gone up will probably need to go to the higher dose once his digestive system is handling it better. Everyone I know of who has been on exjade has lowered their ferritin, some much quicker than others. If he can tolerate it he should go up to the higher dose soon.

I'm glad to hear from you Shirley. I've been hoping you're well. I don't know if you've read any of the posts about my trip to Maldives, but it was Lisa who introduced me to the patients there and I know she'd be so happy to know I got to meet them. They were all very special to her and she did a lot to help them out. I think she'd be really glad to know her work continues.

Hello,

I have a couple of questions about the Exjade. My son is on Exjade now for a couple of months. He is only 3 years old. He start with a 1 (300mg) pill a day but it didn't work so we had to increase the dose to 3 (350 mg) pills daily. He didn't have any rush when we start the pill. When they increased the dose his liver enzymes rice up to ALT - 169 AND AST - 89. We stopped the Exjade for about 3 weeks and his Ferritin was 1650. We start the Exjade again when his liver enzymes comes down to normal. After 2 weeks on Exjade his liver enzymes is elevated again up to ALT - 141, EST - 86. I think he can’t tolerate the Exade. It's anyone out there had the same experience. Should we stop Exjade and start L1/Kelfer (which I think is not available in USA) or stat the pump. Any advice will be appreciated.

Thanks.

While going through this site, I find that it says that people with a damaged liver should avoid all dairy products (including milk). I just want to add to my previous post that my son is drinking a lot of milk, 3 to 4 8oz bottles a day.

Could the consummation of too much milk, be the problem of his elevated liver function? 

Does anyone have any viewpoints on this?

Thanks,
Emily

Hi Shirley, it's good to see you around.   

If it wasn't for Lisa, this group wouldn't exist, so all the "thank you's" go to her.

There is definitely a chance that Exjade will not work for some patients, but 5 weeks is definitely not enough time to make a final judgement.  I wish he hadn't thrown his pump out, though.  That was not a good decision.

Could the consummation of too much milk, be the problem of his elevated liver function? 

Hi Emilly,

Exjade can cause an increase in liver enzymes.  If your son doesn't already have a problem with liver function, it is most-likely not the milk.  If his doctor is not concerned about the liver enzymes being elevated, I would stick with the Exjade.

Hi Danielle,

Thanks for the response. He never had a problem before he start the Exjade. His doctor is a bit concern and he wants us to stop the Exjade again, till his liver enzymes are back to normal. My question was: Could the consummation of too much milk, be the problem of his increased liver enzymes?   
The liver has to work harder to break down all that fat in the milk.

Emily

Emilly, it shouldn't be the milk giving him the problem, if he has a fully functioning liver.  It's most-likely the Exjade, but it should be closely monitored by the doctor.  If his liver enzymes go down each time he stops the Exjade, then that is most-likely the problem.

Hey, i am new to this forum. Jus found out while googling for something. I am a beta thals major and needing transfusion every 4 weeks.

I am on Exjade (more known as ICL 670 in this part of the world, Malaysia). Started it in Nov 2006, been taking it around 3 months i guess but stopped 1 week in between that period. It didnt start off that great for me as i had rash for almost a week and i needed to use the toilet more than usual. After 1 month of using it, i went for a test and results came out that my liver enzime is 5 times more than usual  Stopped it for a week and restarted again after my enzimes went back to normal on the 2nd test.

I am using 1125 MG, 2 big tablets and 1 small tablet.

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