Discussion Forums > Thalassemia Major

Liver levels and exjade

(1/5) > >>

ama:
My son who is 2 was on exjade 250 for almost 9 months.  He had some fluctuations of lft, alt and ast both in range of 200+  but usually trend down with time to 100+  when recently dr decided to increase dose of exjade to 3 tablets of 125mg.  His lft alt went upto 600.   Dr decided to reduce exjade to 1  125mg tablet per day for a month.  Now his ferritin increased to 1600 from 1200 on 1 tab but lft [alt] is normal 40.   

Dr has decided to increase exjade again to two tablets of 125 for controlling ferritin.  However, I am concerned that will it again cause lft to go up?  Will this time , re introduction or increasing dose will be better tolerated by by son s liver? 

Dr says if again alt go up to high levels then he will advise desferal. 
The combination of exjade and ferripox is not yet used in combination in usa.

I am terrified of needles for my son and don’t want him on desferal.  I want exjade to work.
My question is ..   will liver tolerate reintroduction of exjade ? I am already splitting the dose of exjade and giving more fluids.    Is there any other thing I can do to minimize the side effects and prevent lft from going up?  Thank you so much for your help and guidance.

Sharmin:
Dear ama,

I understand your fear of desferal, my son was on desferal for 10 years.  I think that you will have far better results if you split the dose of exjade - half in the morning and half in the evening. it will reduce side effects and increase efficacy.  exjade always increases ferritin levels in the short time and reduces them in the long run.  The reason for that is - exjade enters the organs and expells iron - which is then clear out of the plasma.  If exjade and desferal are used in conjunction - the desferal (which is too big to enter organs) quite effectively clears iron from the plasma.

My son was on a trial studying the use of desferal/exjade together and he has done well.  The 2 drugs are quite well studied together -but may not be best for a child the age of your son.  I think that splitting the exjade dose and giving it with meals will work the best for you.

Best of luck and please don't hesitate to ask if you have any concerns,

Sharmin

ama:
Thank you sharmin.. How is ur son doing on Exjade now? Is he still on desferal? 

Sharmin:
Hi Ama,

My son has been on exjade alone since 2008 - he has maintained ferritin levels between 300 to 500 since that time.  We have split his dose and give him exjade with food. 

He used combination therapy exjade/desferal for less than one year - within a few months his iron levels came down so low that they had to stop the desferal - since that time he has been on exjade alone. 

Best of luck!

Sharmin

aus:
Hi,

My son has been on exjade for 6 years now. He has never used any other chelation medicine. Recently, he had a 3 month break from exjade because his ferritin level has dropped below 500. The doctor here in Perth thinks that if ferritin is kept too low, it will stunt his growth. His ferritin has now risen to 730 and he is back on 1 pill 250mg. He had a lot of problem when he first started exjade. His ferritin kept going higher and higher, reaching 5000 at one point. Then when it dropped, it continued to drop. I think it is different for everyone. So far, there are only 5 thalassemia children in Perth and out of them, 1 cannot take exjade.

Navigation

[0] Message Index

[#] Next page