Discussion Forums > General Chatter
Have a Great Trip, Sharmin!
Zaini:
Thanx for sharing the information sharmin.
ZAINI.
Sharmin:
Since returning from the trip my son has started his new treatment. In preparation for the rituximab he was given IVIG 1 week ago. He was given two 12 hour infusions. This experience proved to be a nightmare, after receiving the 2nd bag he developed a terrible fever, painful headache, stomach ache, nausea and vomiting. He did not eat anything for 4 days and we were very concerned about him. The doctor said that this type of reaction sometimes occurs with the IVIG - but is not common. He said that although it was uncomfortable for our son - he was not in any danger. Most people do not react this way to IVIG.
Yesterday he received his first Rituximab treatment yesterday, and it went very well. He will receive 3 more over the next few weeks and we are currently weaning him off of the steroids. He has shed off most of the 'puffy' cheeks:) We hope that this will take care of the antibody problem thereby reducing transfusion requirement. With increased chelation and combined desferal/exjade therapy we hope that his iron levels will be reduced very quickly. He will also be on maintenance IVIG treatment - small monthly infusions until his own antibody production returns to normal - hopefully without the autoantibodies this time.
I hope that this helps others who have antibody issues. We have heard that in most cases this method eliminates the problem and people return to normal.
In two weeks we will be seeing Dr. Vichinsky again - before beginning our combination chelation therapy. We will also be having an MRI of the heart to ensure that there is no iron his heart. At this time we will also be inquiring about fetal hg inducers - which may be a possibility once the iron issues are dealt with. We will share this information with all of you once we receive it. There are inducers that can at least reduce tx requirement if not eliminate it.
It has been a productive and at times very difficult few weeks - but we hope that what we are going through now will keep our son healthy in the future - and we hope that the information we are able to share, as well as our experience, will help others.
Sharmin
Zaini:
Best of luck Sharmin, :goodluck
ZAINI.
Andy Battaglia:
Sharmin,
Best wishes for this treatment. Is your son completely off prednisone now?
nice friend:
:goodluck Best Of Luck For Your Son Sharmin :goodluck
Hope he will get well soon and he will get helthy wealthy and happy Life .......
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