Exjade works !

Hi Andy and all friends here at Thalpal,

Happy New Year to you all !

Wanted to share a good news. My 3 yr old switched to Exjade in september'09 (125 mg X 3 tabs) when her ferritin was ~ 1300. We crossed the magic 1000 this month ...She was on desferal for almost 1 year ..Her hemo did not want her to be on aggressive chelation at the age of 2 on desferal. her Fe hovered from 1600 - 1300. But with Exjade, it started steady decrease and now it is below 900.

She drinks Exjade with plain water but gets to eat 4 M&Ms in between to get rid of the bad taste. Hope this sharing will help other parents with young kids that need to do the chelation.

Bostonian,

Congratulations!  Exjade does work, after 18 months lil A's ferritin has dropped to 450.  You will notice the difference very soon!  I like the m&ms idea   Lil A is becoming a little grouchy about taking his exjade so we will have to try it as well. 

Please say hello to your lovely wife and daughter for us,

Sharmin

Hi Bostonian,

Really glad to hear that,more and more posts day by day are proving that exjade is the best chelator to start with,i don't remember the name but i think there were other members who saw decrease in their young one's ferritin with exjade,and it didn't elevate before going low either,so happy for your little angel  .

Zaini.

Hi Bostonian,

Wonderful news, exjade no doubt has improved the compliance with chelation but also has proved to work more effectively than desferal.

Little Miss A ferritin is now 875.

I talked to the thal nurse and she said she is getting good results in all the patients, mainly because exjade works 24 hours in the body as oppose to short life span of desferal.

Thanks Sharni, Zaini and Canadian Family.

Sharni, my wife also sends her greetings to you. She told me you are a big source of inspiration for her and she was really glad to go to NY for the conference and meet you

Canadian Family: It is great to hear that little miss A's ferritin is below 900.

hi Bostonian,
  ....

umair

Thanks Umair....

Bostonian,

It was a pleasure to meet your wife as well   Meeting thalpals was one of the best aspects of the trip for my husband and I.  I hope that we can meet again someday. 

Wishing you continued luck with the exjade.  I hope that we can get our children's iron levels to ranges very soon.  Next goal - ferritin <100! 

Sharmin

I am amazed! Apart from me, you are the only one setting this goal, Sharmin!
But certainly this is the right goal to be set nowadays...

Lena.

Lena,

Don't forget Little Z  we are also in the queue for 100,but right now we are waiting for it to come below 1000 .

Zaini.

Good for you, Zaini. I am happy to see more and more aiming  at fe below 100.

Lena.

We are taking a step approach next goal is 500....then 100....

The only thing i worry about below 500 ferritin is - is it going to affect her growth as she is just 3. next time I meet Dr. Neufeld, I am going to ask this question. What is a realistic ferritin target for growing children? For adults, it is as close to normal....but children and teenagers who are still growing, what should be the ferritin target?

Andy, do you have any thoughts?

Bostonian,

I think this may depend on which chelator is being used. Desferal may compromise bone growth, so a very low ferritin level may not be a good goal for growing children if they are using desferal. I do not believe this growth slowing property has been observed with other chelators, but I would definitely ask Dr Neufeld his feelings on this. I think that with close monitoring, it is much easier to reach a low ferritin goal, but you should find out if there are any negatives involved before aiming for that goal. By the way, I was really impressed with Dr Neufeld's personality at the NYC conference. He must be a great guy to deal with.

Thanks Andy for your comments! Dr Neufeld had similar view like yours..and yes, he is a very approachable doctor. He is highly regarded here.

To quote... "The goal for a chronically transfused child on chelation is between 500 - 1500 depending on where they are at in their chelation/transfusion regimen. Also ferritin does not mean the same thing for every patient and we can discuss that further at your next visit".

Bostonian,

I think this may depend on which chelator is being used. Desferal may compromise bone growth, so a very low ferritin level may not be a good goal for growing children if they are using desferal.

I agree with Andy, little Miss A is growing better with exjade, she is taller and weighs better.