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#1 | ||
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Member
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Last edited by BBS1951; 12-19-2006 at 09:18 PM. |
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#2 | |||
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In Remembrance
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I know someone who was in a Rituxan Study. I think this person is OK. It's been awhile, but I remember that this person felt better after the infusions.
This is another Med like Tysabri, so I'm not surprised about PML being a factor. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#3 | ||
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Junior Member
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Would you believe the docs are trying to get my daughter to agree to treat her 3 year old son with Rituxan. He has ITP, idiopathic thrombocytopenia purpura. He's considered chronic and has not responded to steroids. She has consulted with several of the best pediatric hematologists and they all suggest Rituxan.
So far Kendra hasn't been willing to use the drug as it's not approved for ITP and the positive results with the drug are only about 30%. She wants to use the wait and watch approach. Treat only when his platelets are really low. Her Dr wants him on continuous steroids. What a problem. Dr has threated her with protective services. Worry, Worry, Worry. Betty |
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#4 | ||
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Member
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Quote:
Harry |
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#5 | |||
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In Remembrance
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Oh Betty, that is so scary. A sweet little 3 yr old, being abused by these Doctors.
![]() I'm going to go look it up right now, so I am more knowledgible. Be back later. (((((((Betty))))))) Below is what I found, Betty and eveywhere I read, it said the same thing. In children, unless chronic, usually goes away on it's own, without treatment. Acute attacks may be treated with short term steroids. As far as I can see, your DD is right, a wait and see and treat as needed. These Docs are el-wrongo and, after what I read, childrens service should be called on them and not your Daughter. How is ITP treated in children? Because most children recover with no treatment, many doctors recommend just watching them carefully and taking care of the bleeding symptoms. Children don't have to go to the hospital if good care is available at home. However, some doctors recommend a short treatment with prednisone pills or intravenous infusions (given in a vein) of gamma globulin to increase the platelet count more quickly. Both medicines have some side effects.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ Last edited by SallyC; 12-20-2006 at 12:33 AM. |
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#6 | ||
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Junior Member
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Quote:
http://www.fda.gov/cder/drug/InfoShe.../rituximab.pdf You have to keep reading down for awhile to get the more detailed info. Let's see if this link gets you right to it.
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Susan I got an "instant" dx of both MS & HNPP in July, 2003, but had likely had MS for at least 30 years by then. I've never taken any prescription meds for either MS or MS symptoms (except 1 yr on LDN). |
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#7 | ||
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Member
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Yes, monoclonal antibodies are a tough group. I'd say use them only if you are desperate. My very educated doc friend who's child has Chrohns said he would never try monoclonal antibodies: He considers them too risky; too much fooling around with the immune system.
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#8 | ||
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Member
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Thanks for this info. Important to know.
Last edited by wannabe; 12-20-2006 at 10:08 PM. Reason: just feeling sorry for myself. |
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#9 | ||
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Junior Member
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Sal, Yes there is no effective treatment for ITP. Of course we have no idea how or why he developed this disorder. Our daughter is OK with treating as needed. However the docs have been really pushing hard for continuous steroids etc. They have practically threatened to report her to protective services for not following their directions.
Ben is relatively healthy except for his platelets and potential for bleeding which is also relartively rare. The medical profession wants to be in charge of all aspects of his life, even if there is no definite research to support their plans. Not much fun. Thanx for caring. Betty |
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#10 | ||
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Member
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Quote:
Harry |
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