desferal

Dear Andy,dear friends,
My son is 20 years old. The ferritine is 2100.He has desferal five days in the week.He has 3g desferal,his weight 50 kg.The level of ferritine is 2100 since a long time,and i want it to be under 1000.How can i do?My son don't support exjade and ferriprox give him nausees.Thank you for your help and excuse my english.
Karima mom of zak.

What is his problem with Exjade? Is it also nausea or something else?

Hello,he had no appetit and his weight was very bad and he was very tired all the time.i was scared for him.

Have you ever tried to give it with food or right after a meal? Or to split the dosage? In general the best way to lower ferritin is a combined therapy. That does mean 2 of the 3 chelators together for a while.

No i don't because the notice says that the estomac must be empty.I would try what you've said but i read that exjade has bad side effect at older thal,so i am scared.I hope to know if there are thals who have 20 years old and plus taking exjade.Thank you for your helping so i can give my dear son the best.

 
I'm 43 years old! The leaflet isn't updated, nowadays people are taken Exjade with or without food and even with splitting the dose. Same as with Ferriprox... I take both in combination without any problems since over a year...

Oh!it is nice that you have 43 years old..in my country i haven't seen so old thal yet.so you take both ferriprox and exjade until one year?and before you take which chelateur?what is the level of your ferritine please?I have a lot of questions but it is difficult in english.do you understand french?

I'm sorry but I don't. I speak German English and Greek. In my life I went through all chelators, starting with desferal when I was about 10 years, then In 1994 I became allergic to it and start Ferriprox. From 2006 I started Exjade but alone it didn't work so well so I began combined therapy. My ferritin levels travel from 7.300 to 800 and back to 4.000. Now I have about 1.000 last year it was 3.000
 What age of is the eldest patient you have met in your country? I'm also in Germany one of the oldest.
 If you have any questions just ask me...
That's what I'm here for, that's why  we're all here...

Karima,

Exjade does not need to be taken on an empty stomach. I know many patients taking it after dinner, as it is the only way it doesn't upset their stomachs, and it works fine for them.
The problems older people have had with Exjade are found in elderly people, usually over age 70, who do not have thal, but have another unrelated condition.

I would suggest trying Exjade again, but in a low dose and mixed with food, instead of taking it on the empty stomach. Continue the desferal, as well. Also, watch for the new form of Exjade in pill form, called Jadenu. It is approved in the US and should soon see approval elsewhere. It greatly cuts down on nausea because the fillers in Exjade are not present in Jadenu.

Nomad,
why yourferritine is sometimes high,perhaps you miss to take your pills?Have you done RMI for the liver?I do it for my son last year at paris and the liver is very full of fer..do you think he will be better as the ferritine will be under 1000?my son has too ferriprox since he was 9 years olduntil last year,ferriprox protect his heart,but now he has nausees just as he looks at the pill.
I think the oldest thal is about 35 years old.

Andy,
Thank you for the precisions.Can you tell me the posologie of exjade and desferal if using both?my son is 50 at weight.the ferritine is 2100 but he has a lot of fer in liver:une surcharge majeure hepatique en fer.it is french.

Once the ferritin get low, so no free iron is available, the organs like liver and heart will start "extracting" stored iron. I can't imagine that after 9 years of taking Ferriprox it could give you nausea just like that... Have you considered other possible reasons? If he tends to gain iron more in the liver Exjade would be the best solution. Once he's on a normal level again he can switch to Ferriprox. He can take up to 40mg / kg / body weight

Karima,

He can take desferal and Exjade together in normal doses of each. It will take some time to remove the iron from his liver, but once it does and his ferritin is under 1000, he will be able to use just one chelator.

I agree with you but iron causes damages to liver like fibrosis whenever there is no more iron..i think doctors don'tcare about thals and let them alone with their problems..isn't it?
exjade 40mg ok and how many desferal if i do combination ?
thank you very much to show me the way.

Karima,

I would suggest that he continues the same amount of desferal as he has been using. Because he had problems with Exjade already, I suggest starting with a very low dose of 10 mg/kg daily for the first two weeks and see if he can tolerate it without it causing stomach upset.