Wish us luck !!

Zaini,

I hope that all of the tests come back completely normal. 

Best,

Sharmin

Zaini

The test is fasting blood sugar (she should not eat anything but water at least 8 hours before the test)

Wish you all the luck in her results

manal

Hi Every one,

Little Z's tests came back,after two months of Asunra her SGPT is 59,a month back it was 45 which means its still elevating,serum creatinine is same as last month 0.6,well with in range Alhumdulillah,and ferritin is 1592,last month it was 1441,which means it is also rising.
She was taking 500 mg of Asunra,and her weight is 27 kg,i know its a very low dose,but if SGPT is increasing on that low dose where would it be on maximum dose .

I was hoping to switch her to 600 mg,is it ok to increase the dose? i tried reaching her hemo but she wasn't available ,i am also awaiting her Vitamin D results.

Thanks every one.

Zaini.

Hi Sis,
i m not an experty , soo no sugestion at he moment , all that i wana say is BEST OF LUCK  to Littl-Z and May God bless her with the best of health and everything ...

Lots of good wishes
Best Regards
Take Care
Umair

Thanks Umair,

Zaini.

  Ur WelCome Sis, .... dont mind the grin Emoticon bcoze its how i react if anybudy say thanx or encourage's me for something good ,  i always like to reply like this ( with big griny smile ) ...

Best Regards
Take Care
Umair

Zaini,

I asked Oakland about SGPT/ALT - they told me that these levels (little A was 53 last time) are not cause for concern because they are marginally increased.  They said that the levels would have to be much much higher before they would get concerned.  I think that little Z's levels are fine.  You should be fine increasing her dose to 600.

I think that once she starts receiving the full dose of asunra her ferritin levels will come down nicely too.  I am glad that she did not spike after starting asunra.  Little A takes 625mg of exjade - he also weighs 27kg even though he is 10 years old, he's a skinny little squirt 

I think that things are actually looking good for little Z right now.  If you have any concerns I can consult with Oakland. 

Sharmin

Thanks a lot Sharmin 

I understand Little A is not on maximum dose of 30 mg/kg,why is that so? Because he is on desferal too?

Little Z started her dose of 600 mg today.

Zaini.

Hi Zaini,

Yes, I think that is why he is on a smaller dose - because he gets desferal 5 X a week.  I wonder if they will increase his exjade dose once they reduce his desferal. 

Little Z, best of luck with the higher dose sweetheart! 

Sharmin

Thanks Sharmin,

I so wish i can use desferal with Asunra,but i know doctors here won't allow us to,i wonder when the time will come we'll see her ferritin below 1000.

Zaini.

i wonder when the time will come we'll see her ferritin below 1000

Very Soon Sis , INSHA-ALLAH .

Best REgards
Take Care
Umair

Zaini,

I hope that her ferritin is below 1000 very soon, my prayers are always with her. 

Sharmin

Thanks Umair and Sharmin 

Is it advisable to do this combination therapy with out doctor's supervision? i know its foolish of me to even ask,but God knows how desperate i am to lower her ferritin.

Zaini.

Dear Zaini,

Little A is getting a lot of desferal because his transfusion requirement is still quite high.  Usually patients who go on combination dfo/exjade treatment have desferal only 2 or 3 times a week.    Little A is being monitored by the Oakland and for that reason I am more comfortable with him doing this treatment.  I understand that many other patients are also using this combination - but I wonder if they are being as closely monitored as little A.  Currently, we are going back to Oakland every 6 months - and having numerous tests every 3 weeks. 

So far, no adverse effects have been seen in any of the patient using that combination therapy.  If I can send you all of the tests that little A is having done and your doctor can do them every three weeks - perhaps little Z can try the combination treatment with desferal 3 times a week.  Maybe your doctor can phone and discuss the possibility with doctors in Oakland.  The study we are in will be wrapped up in a year or so and then they will be published.  Little Z is in good health and as far as I know she should do well on combination, but I don't know how to advise you at this time.

Remember that little Z's ferritin levels are in a safe range - and soon they will get even lower as her exjade dose increases. 

Sharmin

Thanks Sharmin,

The thing is,i don't know if i'd be able to convince her hemo,when I got a prescription from her for Asunra,she said right away,no desferal and no defriprone,and this is what Novartis is telling everyone right now,so they don't dare go against it.
Although i am thinking of consulting another hemo,Dr Tahir Shamsi,lets see what his opinion is,i once went to him and i found him a lil different,i'll see what he has to say about it,i'll get print outs from the forum for him to see.

Thanks again,

Zaini.