Wish us luck !!

Hi Everyone,

Little Z finished a month on 600 mg of Asunra,i got her creatinine and SGPT checked so that we can move on to 700 mg,and her SGPT is 94,last month it was 59 is that anything to be concerned about.i'll contact her hemo but i wanted your opinion too,is it ok to increase the dose? She hasn't reached her maximum dose yet,which would be 800 mg.

Waiting for your replies,

Zaini.

Dear Zaini

As you know i am not well expierenced in chelation, but from my readings i can say that this is nothing to worry about because it is accompanied by the usage of the chelator and the increase is still acceptable.

Though liver functions are a good reference but when elevated this does not mean the organ (liver ) will be affected or is damaged cause there are many disease where the functions are normal and the tissues of the liver is not normal for example this usually happens with Bilharzia (spelling..) patients.

I am sure Andy or Sharmin will give you a more accurate answer

manal

Hi,

Thanks Manal for your guidance  .

I called hemo and she said that we should stick to 600 mg for now,for atleast a month and then check her ferritin and SGPT and then decide she said if SGPT elevates further we may have to quit taking Asunra  i really don't want to.

Andy,Sharmin,

What do you say? Should i increase the dose or stick to 600 mg for on more month,my understanding was that once Little Z will reach her max dose SGPT may go back to normal please tell me what should i do?

We need prayers,Little Z won't like going back to Desferal .

Zaini.

Zaini,

I think you should continue on the current dose until her next test and see which direction the readings go. Is she taking nigella?

Thanks Andy,

Yes she is taking Nigella daily and i was kind of hoping that it would bring her SGPT down  .Her serum creatinine is 0.7 which is well with in range Alhumdulillah.

Zaini.

Hi Zaini,

Lil A's SGPT levels were elevated too during his last two blood tests - his hematologist - and the docs in Oakland were not concerned at that time.  I will email them and ask them what levels they actually become concerned at, and I will get back to you soon.  Personally, I agree with Andy - I think that you should continue at the exjade level that you are on currently for a little while. 

I don't think that you should be too concerned at this time,  how are lil Z's ferritin levels? 

Sharmin

Sharmin,

Right now we are continuing with the same dose as her hemo and Andy suggested,i didn't check her ferritin this month,because i know that she is not on her max dose so it must be increasing,her doctor also said to give it some time before checking it again,so after completing another month of 600 mg Asunra,i'll get it checked.

Zaini.

Hello Lil Z!
   
 

Best wishes n prayers,
Aunt Pareeshay and lil W.

Thanks a lot sis,:)

You know very well how it was a relief switching from Desferal to Asunra,and you know Z won't like to go back on that.

Zaini.

Hi Zaini
I hope everything resolves in this month and our Lil Z can stick to Asunra. Do you know why this drug elevates ALT levels?

take care
maha

Ops.....  i m Late na ....   its my PC's fault ...
Hi Zaini sis ,

 .

Best Regards
Take Care
Umair

Thanks Maha and Umair,

Guys,

After the last SGPT test i was a bit tensed,i msgd Andy and he told me that the best time to test SGPT is when child has rested properly as with high activity SGPT levels raise higher,i told him that we did this test in afternoon at 4 PM and before that Little Z was playing with her brother,he told me it wasn't a good time.So i decided to repeat it on transfusion day as we leave at 7 in the morning and Little Z wakes a few minutes before,so that we can see the difference,and guess what ? Her SGPT  came back 59  instead of 94,its a huge difference,and i never would have known any such thing if it wasn't for Andy.

Thanks a lot Andy,foe being our guiding light,i can't thank you enough.Now i'll ask her hemo if she thinks its appropriate to increase the dose,even if she says no,i am happy with lower SGPT levels .

Zaini.

Zaini,

I am so glad to hear this!  I think Andy can really create superthals!!

Sharmin

Congratulations Zaini and many thanks Andy



How can labs ignore such an important criteria?

manal

I read about when to do the liver tests on several patient forums but not on any medical site. Once again, the people dealing with it know more than the trained pros.