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Have a Great Trip, Sharmin!

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sah:
Welcome back home Sharmin.Waiting for all the informations you have gathered from your trip.

Sharmin:
Hi friends.  Our trip was fun - and we received a whole lot of information to absorb. 

First of all,  the doctor commended us on the vitamins and supplements.  He stressed over and over that it is just as important to take antioxidants to prevent iron damage - as it is to prevent iron overload.  He was very happy about the IP6.  He did ask us to increase the doses of the other supplements that we are on - we will get a more complete list soon.  He asked us to increase the dosage of zinc as well.  He suggested that centrum silver as a good multivitamin. 

He also told us that with good compliance thalassemia patients can live long and productive lives.  I hope this will be the case for everyone here. 

For the antibody - he suggested that we go on rituximab and gamma globulin.  For those patients who have an auto antibody this is a great option - we hope that it is effective.  We hope to start on this treatment ASAP.   He also suggested that we immediately get the genotype testing done.  We are hoping to take care of it this week.  He says that it will prevent the formation of more antibodies and perhaps lessen activity of the autoantibody - also it may lengthen the time between transfusions.  Doing this in the first place may have prevented the formation of the antibodies in the first place - so I urge patients to have this done. 

On the whole my son is very healthy - and has no physical effects of thalassemia.  The increased transfusions over the past few years have caused iron overload however that we did not detect in the ferritin levels - his liver iron levels are 2880.  The doctor found this to be far too high and our first task is to reduce this immediately.  Our chelation must increase immediately.  This coupled with a reduction in transfusions - which will hopefully result from the ritux - should hopefully resolve this issue soon.  Again we will need your prayers.    I hope everyone has their liver iron concentrations checked - while in the past his ferr levels and liver iron levels have correlated very well  - now they do not. 

I hope this is helpful, I will post more soon.  Please feel free to post questions - i took a lot of notes and I will be happy to answer whatever questions that I can.  Until then - keep taking your vitamins!!

Sharmin

§ãJ¡Ð ساجد:
I'm so happy that he's doing nice. :)

Now what about the fun part?

Disney Land!!!

:woot can't wait to hear about that

Manal:
Sharmin , i know that you must be so tired by now but please if you a have time what is exactly meant by rituximab and gamma globulin??
Also what is the plan for the  concentrated chelation? Did he mention anything about exjade?
How often should you check the liver iron concentration?

From the Cairo conference and from your post it is very clear that ferritin levels are misleading so why we are so concerned about their levels???
 
manal

Sharmin:
Hi Manal, 

We will be visiting with our hematologist at home to discuss the treatment plan. 

My understanding is that Rituximab is an anti CD20 - which prevents the formation of antibodies.   Yes, our new treatment plan will also include exjade - it will be a combination treatment which they plan to monitor very carefully.  Usually you can check liver iron once a year - but we will be checking every 6 months until things are under control. 

An important thing we noted during our appointment is that the doctor felt that we may have avoided damage due to the overload because of the IP6 and the other vitamin supplements.  I therefore encourage everyone to find out about vitamin supplements. 

Sajid, Disneyland was a blast - i will post pictures very soon:) 

Sharmin

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