plz help us

my daughter 4 yrs old is thal major and she is on asunra for the last one yr, her ferritin level increses continously and her LFT and RFT values are also very high so doctor advised to stop asunra for two weeks bt after two weeks LFT values are still higher SGOT and SGPT around 500an 300 plz suggest us what to do we are very much worried otherwise she is active and leading a normal life what abt these higher values and wht are its effects on her in future plz mail us

Hello Simran

What i think you can do is stop Asunra ,then wait and see if SGPT levels go down,since she was on Asunra for a whole year,and these levels elevated through out the year,i think they will take time to go down too,so please be patient.

What was your daughter's ferritin level before she started Asunra? And was she on any kind of chelator before she started taking Asunra? ferritin levels do increase when Asunra is started,it can some times take a whole year or even a bit more to see the full effect of Asunra?And what is the dose she is taking? And with what dose did she start Asunra?

Andy,

Do you think milk thistle can be useful for patients with elevated SGPT levels? Or nigella?

Zaini.

 hi Zaini thanks for urs quick reply
her ferritin level was 1100 wen she started asunra and then increses from 1100,1800,2500,3208,5000,  Asunra is the first chelator we tried on her, her SGOT SGPT values increses mnth by mnth and now wen its around 300+ the doctor stooped the Asunra  PLZ suggest us something

Simran,

What dose was she taking?Is she on the same dose or dose was increased through out the year?

Asunra works on the cellular level ,it extracts iron from the organs,so for sometime you might see an increase in ferritin levels .Right now as you have stopped Asunra,i think you should wait a little more for SGPT levels to come down and the resume it with very low dose.

From    http://www.pharma.us.novartis.com/product/pi/pdf/exjade.pdf

  Monitor liver function tests
monthly during Exjade treatment and consider dose modifications or interruption for severe or persistent
elevations.

Zaini.

plz help us and suggest us the possible outcomes

Hello Simran

I am sure that Andy will give you a better answer but at this high ferritn i would suggest givng her desferal via IV as it will cause a quick decrease in ferritin until you decide whether you will continue with asunra or switch to a more suitable chelator

By the way, the chelating dose of asunra is 30mg/kilo

manal

Simran,

I think you should consider switching her to kelfer or desferal or a combination of kelfer and desferal. I would suggest caution in a young child who is having high liver values that are not coming down. The Asunra dose may be too low for proper chelation but raising it could cause even higher liver results. If at all possible, IV desferal should be given for 24 hours a day for at least a few days to get her ferritin under control. This would bring a quick correction to her ferritin levels and give you the chance to start over with a different chelation choice. I would not recommend trying Asunra again until at least age 6.

Nigella (black cumin seeds) and milk thistle might help to bring the liver values back to normal but I doubt they will keep them down if Asunra is continued right now.