Wish us luck !!

Zaini,

How is little Z ddoing...it is almost a week on exjade?

Wishing her all the best ....

hi zaini
sara has been takig exjade from year in half now. i have not noticed any side effects apart from her stomich. At the start she was having stomich ace all the time. now she has it somtimes. they check her vision and hearing every month she all right so far.
it importent  for zainab to get all her tests done  at least every six monthes. good luck with the new drug.
alia

Thanks Bostonian and Alia,

Little Z is doing fine Alhumdulillah,she complains of a mild stomach ache in the morning but she used to do so before asunra too,so i am not sure if it's relative.

The thing thats getting difficult day by day is making her drink lots of water,after first few days,now she forgets easily that she has to drink more water  yesterday she came back from school with her bottle half full,and her school is from 8 AM to 4 PM,meaning 8 hours.

On the other hand i was just watching her yesterday and was thinking that drugs like exjade or asunra can have a lot of psychological impact too,not directly but indirectly,after 4 years of being on pump,she is very happy to stop it,she says i can play more now when i don't have to watch time to start pump,I told her that  she is very lucky,there are people who have spent their lives with pumps.I wish every thal patient will get rid of needles one day.

Much love 

Zaini.

Zaini,

I hope that things are going well with exjade.

Sharmin

BEST WISHES FOR LITTLE Z .......

Umair

Thanks Sharmin and Umair 

Zaini.

Zaini,

Just make sure she is eating well despite the tummy ache.  Little A tends to lose weight because his appetite has decreased so I really have to keep an eye on him.  I find that he does not eat as much as he used to at once so I offer him more snacks while he is doing his homework etc. 

Sharmin

Sharmin,

Her eating is fine Alhumdulillah,she is not complaining all the time ,just in the morning,and today i noticed that it's not every morning she complains,and she used to complain of tummy ache in the morning even before starting Asunra,the pattern is same.

I am just anxiously waiting to increase her dose,15mg/kg is extremely low dose and it's bound to increase her S.F levels,i wonder if her hemo would give me a prescription after she completes her first 15 days.

Zaini.

Zaini,

I am glad to hear that.  Eating and drinking well is very important when taking exjade.  I think that little A's stomach was upset by some of his treatment this summer - when he wasn't able to eat anything for days.  The doctor thinks that when something like that happens it takes a while to get into good habits again.  Breakfast became tough for a while but things are much better. 

Little A's dose was 500mg from July 30th to October 12th (about 2 1/2 months).  During this time the tests (metabolic rate, creatinine) were done a few times and that gave the doctors in Oakland the confidence to increase the dose to 625.   I wonder if they waited this amount of time because they knew we would be back in October and so they decided to wait - or if in fact they wanted to see how he did on the lower dose for a while.   I think that 15 days isn't long enough to observe how she is doing on the lower dose - she needs to have at least one or two blood/urine tests before her dose is increased. 

When his dose was increased from 500mg to 625mg we did not notice any difference at all - so if little Z is tolerating the lower dose she will do fine with the full dose too. 

I do agree with you that the lower dose may no be helping with her ferritin levels, and in her case because she is not on any other chelator her ferritin may go up a little while she is on this lower dose.  However, as this is the process by which all new patients begin using exjade (starting with a lower dose) I think that this short period of time will not affect her in the long term. 

Wishing the little princess all the best,

Sharmin

Yes i also think i'll wait for a month,finish the box,will do all the necessary tests and the will ask her hemo to increase the dose.

Zaini.

Zaini,

While she is on the lower dose of exjade - the IP6, carao and other antioxidants that she is on will bind free iron and protect her.  If she gets IP6 at least twice a day that will be great.  Dr. Vichinsky was convinced of the ability of antioxidants such as IP6 to bind free iron.  Carao, along with protecting red blood cells and possibly affecting their effeciency - is also a strong antioxidant and in that way may provide protection from iron for thals. 

Sharmin

Sharmin,

Yes she is taking IP6 twice daily,along with carao,and to some extent i think carao is also effecting her transfusion intervals,but it's quite expensive for us,i wonder for how long i'll be able to get it.
She is also taking Vitamin E 400 IU.
Zaini.

                                             alhamdulilah rab ala'alameen
                                       
                                                         khalifa
                                                  state of kuwait

Indeed "Alhumdulillah Rab al Alamieen" .

Zaini.

Tomorrow we have an appointment with my daughter's hemo,all the tests will be done today,we'll be doing CBC,Ferritin,Serum Creatinine,SGPT,Urine Protien and Urine Creatinine.
Any thing else i should ask for?
Three tabs of her frist box are still left but i am doing it a bit early because i need a prescription from her hemo to get another box,since hopefully we'll be increasing the dosage,and she won't give me any prescription unless i show her the results.And Novartis people told us that it's better to order the med 2 days before,so i will get the prescription tomorrow and will call them immediately,and will recieve the med after two days,that's how Little Z won't have to go with out any chelator even for a single day.
Once again,wish us luck .

Zaini.