Discussion Forums > Thalassemia Major

Update and questions

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Manal:
Sharmin my dear friend , i am really so happy for you and your son.  I know how stressed you were all the past months :empathy, but thanks God for this wonderful result that i am sure will be better and better. Enjoy every moment my friend, you are a really wonderful mum and you deserve all the best :hugfriend :hugfriend :hugfriend :hugfriend
manal

 :hi5girls :hi5girls :congrats :yay :stars :stars :stars :stars :stars :stars

§ãJ¡Ð ساجد:
Hi Sharmin,

That's a great news :yahoo

Time to kick back and relax :party

Sharmin:
Thank you my dear friends  :love

I hope that he continues to improve.

I wish you all the best,

Love,
Sharmin

Sharmin:
Hi everyone,

We had a transfusion today after 3 1/2 weeks.  The doctor was pleased.  He was also pleased that the ferritin levels have decreased. 

Andy,
I have been hearing that ferritin levels seem to increase initially when using exjade.  Are we not seeing this because we are using the combination therapy?  Could it be that Exjade is clearing iron from the organs and tissue, while desferal is excreting the extra S.F. that is resulting from the Exjade?  Perhaps that is the helpful mechanism behind the success of combination dfo/exjade therapy. 

I hear that they are having a lot of success with this combination therapy.  We have only been on it for about 6 weeks.  Of course we need to see a few ferritin levels over time to get the real picture. 

Sharmin
Sharmin

Andy Battaglia:
Hi Sharmin,

The combination of desferal and Exjade has been very successful in rapidly reducing iron levels in one of our members who was in serious condition with congestive heart failure. Her results were amazing and her ferritin is now under 1000.  I would like to see formal trials but by the time they get around to it, the use may be so widespread, that there won't be much point to trials, other than to establish dosages. I wonder when we'll heard from someone who is using desferal, L1 and Exjade together. It's bound to be tried by someone. A trial using all three would be very interesting.

Everything has been progressing nicely for your son recently. One reason this whole experience hasn't taken more of a toll on his health is that he has been in very good health all along. Diet, supplements and exercise have all played a role. Thals have to work at being healthy but with work, it is possible to have a normal life.

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