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Some good news!!!

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Sharmin:
In addition Andy, it seems that my son won't need a tx for another two weeks.  The labs indicate that the antibodies are nearly diminished.  His pred dose is being decreased to 5mg alternate days - soon to be taken away completely. 

I am very glad for this because it will give his body a chance to get rid of the iron.  The blood bank is also working on getting him better matched to prevent problems in the future.  Andy, my fear remains the risk of antibodies returning once the effects of the rituximab wears off.  Is there anything else we can do to prevent this?

Thanks,

Sharmin

nice friend:
Hi Sharmin ,
 :congrats     :congrats     :congrats
 :congrats  congrats to you and your little soldier :congrats
 :congrats     :congrats     :congrats
 It's nice to hear that Sis .......
 I am realy happy for you and your little Soldier ....

Best Regards
Take Care
Umair

Maako:
Thats very good news sharmin. :D


--- Quote from: sharmin on October 01, 2008, 05:11:59 PM ---Andy, my fear remains the risk of antibodies returning once the effects of the rituximab wears off. 

--- End quote ---

Praying this doesn't happen anytime soon, coz from what i read, the effect can take as long as 6 months to 3 years to wear off.. Praying for the latter. :hugfriend

Smurfette:
Can I ask a question?

These antibodies your talking about. Does he have a reaction when he has a blood transfusion?

If so, well sorry to say that they will be with him all his life... Correct me someone if I am wrong!!!

I have had some major reactions due to blood transfusions and that my body didnt agree with...

I have to have my blood washed and even filtered now so I dont get anther bad reaction too.. Oh I also have hydrocortisone...

Thats how bad my reactions were...

Hope I was helpful, but somone correct me if I am wrong..

Thank you
Take care all..

Sharmin:
Hi Smurfette,

The antibodies you are talking about are called allo antibodies - the body produces them in response to markers on foreign antigens. 

In my son's case, as can often occur with other frequently transfused patients, he formed several of these allo antibodies.  His body then created an auto antibody which indiscriminately destroys all red blood cells.  Although my son has never had a transfusion reaction - he experienced increased hemolysis leading to an increased transfusion requirement.  This lead to some iron overload. 

Initially, he was treated with prednisone - but prednisone was not effective enough in slowing the hemolysis.  He was then treated with Rituximab which shuts down the production of antibodies - including the antibodies that were causing my son to have hemolysis.  The process was very very difficult, and we suffered a lot during this therapy.  Thankfully, as a result his transfusions are lasting 3 times as long and the antibodies can no longer be detected in his body.  He seems to be very healthy now. 

At sometime in the future normal antibody production will resume in his body, and our hope is that the trouble making antibodies will not return.  Once shut down, these antibodies need not return, he can have complete remission if we are fortunate.  One way of preventing this (as per our hematologist and most prominent hemotologists such as Dr. Vichinsky) is by better matching his blood through genotype matching - so that the auto antibodies will not be triggered again. 

Therefore, my hope is that the antibodies will not be with him all of his life.  I was wondering what else we can do to keep the antibodies from becoming active again. 

As for your allo antibodies - the first line of treatment is always hydrocortisone and carefully cross matching - or the use of washed red blood cells.  If the problem is very severe then rituximab can be considered.    I would also recommend that you look into genotyping - because in some cases multiple allo antibodies can lead to the development of auto antibodies. 

Good luck,

Sharmin

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