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    Old 08-20-2003, 12:23 PM   #1
    kymomlee
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    Post Rituxan

    My daughter has autoimmune hemolytic anemia and has had 3 courses of rituxan ( 12 doses). She still is having problems. I just wondered if there was anyone out there that has had this much rituxan and still has a problem. She is very allergic to the rituxan and had has almost every infusion stopped due to wheezing or rashes. I was hoping someone might offer other ideas
    Thanks

     
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    Old 08-21-2003, 07:57 PM   #2
    Jenlynmar
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    My daughter also has autoimmune hemolytic anemia and had 5 wks of treatment with rytuxin. It didn't help her either. I'm just wondering if she has had Immunoglobulin IV infusions. They really helped my daughter for 4 years...............she was put on lipitor and I believe it caused my daughter to get the IG IV's at closer & closer intervals and became immune to the immunoglobulin IV's. She went a long time 10 weeks at first.
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    Old 08-26-2003, 09:02 AM   #3
    kymomlee
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    She has had multiple doses of IVIG The first time she got it was in 2001, 5 doses in 5 days. I think she has had about 20 total doses the last one about 1 day before the last course of rituxan.
    Since we moved to this area, She has had reactions to the IVIG. Exactly 24 hour after the IVIG is given, she starts vomiting and spikes a fever, usually in the 104 range and needs iv fluids After about the 4th time this happened her hematologist decided to have a central line placed. So now she has a mediport. I feel like this will never end. When she was diagnosed they said it would be 4-6 weeks of steroids, don't worry about it only 1 in 100 cases last longer. Now I feel like this is part of life, and I hate it
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    Old 08-28-2003, 08:33 PM   #4
    Jenlynmar
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    Dear Kymomlee,
    I feel I know how you feel. My daughter has beeen dealing with this since June of 1996. Her hematologist just suggested trying erthropoitin (?) Administered subcutaneously ..........a seies of treatments, in hopes of helping some.

    Also, she gets 2 units of red blood cells each month which keep her living a normal life of a busy working Mom. She also is going to try carnitor & B2 which has helped to extend the time length between transfusions on people who have beta thallasemia and acquire too much iron in their bodies.

    I thank Heaven for desferral which helps rid the body of excess iron buildup.

    With every passing day there is hope SOMETHING will be the answer..............

    Her last trial was thalidomide.........it didn't help her and scared us terribly. She had peripheral neurapathy...........tingling/numbness in her hands and feet........then a scare where one whole side of her body felt that way. We rushed to the hospital where they did a brain scan & EKG. Nothing showed up and she returned to normal a few hours later. Need I say that was the last thalidomide pill she took or ever will take?

    You two will be in my prayers. Most people have found the SOMETHING that helped them. I say it's your and my familys' time soon.

    Sincerely,
    Mary Ann
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    Old 05-12-2004, 04:09 PM   #5
    mansle
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    Re: Rituxan

    so far rituxan is working for me. im not hemolizing and my hemoglobin is over 12, but i have had my spleen removed. i'm down to 20mg of prednizone a day and my daily 1mg of folic acid.

    mansle

     
    Old 05-23-2004, 07:46 PM   #6
    mansle
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    Re: Rituxan

    i spoke too soon... my hemoglobin just dropped back to 10.9 and the hemotologist is reluctant to give me the treatment again because he says it cost too much...i want it again even if it only lasts a month...

    mansle

     
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