almost 1 year on exjade

Lil A has been on the exjade/desferal combination for almost one year now.  His iron levels on year ago were 2880, on June 29th his ferritin level was 861.  The one year study is completed in early August, I will post the SQUID results at the time.  His ALT level had increased briefly, but it has remained low for the last couple of visits - on June 29th it was 25.  Even though his ferritin levels are low, we are continuing to give him desferal 5X a week and exjade daily. 

Again, I have to thank Andy for getting us here - we were headed for trouble - but with Andy's guidance and a lot of hard work I think that we are in control of the situation. 

For everyone on exjade, please be patient - it took us a year to get here but it is worth it now:)  Thank god that things have worked out the way that they have.  At the moment he is getting transfused every four weeks, 15cc/kg.  Pretx hg is around 102. 

Thanks for all of your continuous support and prayers,

Love,
Sharmin

Sharmin,

I am so happy for our Little Champ,May God bless him always,We ourselves are waiting for Lil Z's ferritin levels to go down,she is on her max dose now and i have faith that eventually her ferritin will go below 1000 INSHALLAH.She has had her annual tests done,I'll post them in other thread when i'll get the final results.

I hope you are feeling well yourself my dear friend  .

Zaini.

Hi Sharmin
This is such wonderful news. I hope he can cut off the desferal soon. Way to go champ .Hope you are feeling well too.
take care
maha

God bless Little Z and Little A.

Good progress by both and I hope the ferritin level come down below 500.

sara has been taking exjade more then year ago her firrten is still 2500 t goese a little up in down she taking 375mg from the past year can anyone plz tell why that might be still so high thanks
alia

Hi Alia,

Can you tell us what is Sara's weight and how old is she now?

Zaini.

Thanks Sharmin for sharing this wonderful news. You and little A deserves the best after all the hard work, Way to go and keep it up

Zaini
Praying that little Z results will be more than wonderful

Alia
As Zaini said, you must make sure that you are giving the right dose according to Sarah's weight. The chelating dose is 30mg per kilo taken on empty stomach and using plastic cup and spoon.

manal

Thanks Manal 

Zaini.

sara is 15kg and nearly 4 thanks for replies

Alia,

Sara is not on full dose,you need to increase her dose,her max dose will be 450 mg,as in 30mg/kg.If she is having no side effects you can increase the dose and then Inshallah you'll see the decline in her ferritin,right now she is not on chelating dose,its more like maintenance dose.

Zaini.

i know i dont really have a doctor that is helpfull at these things,i got to talk to him about that.
thanks zaini

Alia,

As Zaini has said, your daughter is on a maintenance dose and it seems to be effectively maintaining her iron levels.  To decrease her level it would be a good idea to increase her dose to 30mg/kg.  It takes time for ferritin levels to decrease, but you will eventually see the change. 

Best of luck Alia and keep us posted.

Sharmin

Hi Alia
My son also weighs 15kg and is on 400mg/day. He has been on this dosage for almost six months now. To start him on 500mg I will have to wait until he is nearly 17kg. If exjade is available in 75mg then you might be able to start Sara on 450mg. A dose above 30mg/kg is not advisable for kids. Another question is what are her pre tx level? Also what are her blood requirements and how often does she transfuse? How long has Sara been on 375mg dose?

maha

Thank you   maha,sharmin  n zaini
Sara is having blood transfusion every 3 weeks
she got 230mls last depends on her wieght, they dont have 75mg exjade available here. sorry maha what is pre tx level?she started her 375mg exjade for about 8 monthes.i hope the iron hasnt damege her organs.
maha can plz tell me about yr sons ferriten,his age and how often he is transfisfused.
i dont even know f the doctors here knows anything at all as the sara is only thallasimia pation they dealing with
alia

Hi Alia
My son is 3years and 2months old now.His last recorded ferritin was 1751ng/ml which was 2 months back. We repeat his ferritin every month and I will get his last months report when I go in for his tx this week. Will update then. By pre tx I meant pre transfusion hb. He gets transfused every 4 weeks.

maha