My son has was diagnosed in May. He is 10 years old. The IVIG is not working anymore and neither are the steroids. The doctors want to try a drug called Rituximab. I am leery. Had anybody had experience with this drug?
My daughter is almost 12 and was diagnosed in April. She also does not respond to IVIG or Prednisone. Just last week her count was two again. The doctor gave us the option to either do Rituximab or Dapsone (which is a pill taken daily). We chose Dapsone for now. If it doesn't work we'll be moving on to Rituximab. Sorry I don't have an experience to share but just wanted you to know your son is not alone.......
Hello! My son is now three and he has had ITP for 1.5 years. He did rituximab when he was two. It wasn't as bad as I thought it would be. He had a little nausea and we kept him away from large groups of people for about six months afterwards. Unfortunately it did not work for him but I know many people have a good response to it. He is only weekly nplate injections now and is responding very well! Best wishes for you and yes you are not alone.
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