[ KidComm Nephrotic Syndrome Parents Place ]

*NOTE* You must register to use this board. All posts will be reviewed before being posted. This is done for your protection and to stop spammers with nothing better to do with their time. Your post will usually show up within a few hours.

Rituximab Therapy Posted by aquamarine on February 10, 2008, 6:43 am 82.43.222.62 Hi All Just to let you know that my daughter Hannah who has steroid resistant nephrotic syndrome for 2 1/2 yrs anad is aged 7 now is going to be having a second lot of rituximab theraphy on the 5th and 19th of march 08. She has her first lots of this back in April 2006 and that put her into remission after six weeks and was the only thing to do so. She stayed in remission for 15 months but relapsed last july 07 and had been on many high steroids and cyclopsorine since so i am glad that finally our london hospital has agreed to give her a second lot. I will keep you posted to developments but fingers crossed it will work as good as last time???? The treatment does leave her feeling more tired but after a short time i know from last time she should pick up?  Post a Response

Re: Rituximab Therapy Posted by grayden on June 13, 2008, 9:38 am, in reply to "Rituximab Therapy" 68.96.201.107 I will say some prayers --Previous Message-- : Hi All : : Just to let you know that my daughter Hannah : who has steroid resistant nephrotic syndrome : for 2 1/2 yrs anad is aged 7 now is going to : be having a second lot of rituximab theraphy : on the 5th and 19th of march 08. She has her : first lots of this back in April 2006 and : that put her into remission after six weeks : and was the only thing to do so. She stayed : in remission for 15 months but relapsed last : july 07 and had been on many high steroids : and cyclopsorine since so i am glad that : finally our london hospital has agreed to : give her a second lot. I will keep you : posted to developments but fingers crossed : it will work as good as last time???? The : treatment does leave her feeling more tired : but after a short time i know from last time : she should pick up? : :  Post a Response

Re: Rituximab Therapy Posted by patjo on May 28, 2008, 2:02 pm, in reply to "Rituximab Therapy" 87.80.196.249 --Previous Message-- : Hi All : : Just to let you know that my daughter Hannah : who has steroid resistant nephrotic syndrome : for 2 1/2 yrs anad is aged 7 now is going to : be having a second lot of rituximab theraphy : on the 5th and 19th of march 08. She has her : first lots of this back in April 2006 and : that put her into remission after six weeks : and was the only thing to do so. She stayed : in remission for 15 months but relapsed last : july 07 and had been on many high steroids : and cyclopsorine since so i am glad that : finally our london hospital has agreed to : give her a second lot. I will keep you : posted to developments but fingers crossed : it will work as good as last time???? The : treatment does leave her feeling more tired : but after a short time i know from last time : she should pick up? : : Hi there, are you able to tell me which hospital- I know someone who needs this but the hospital is having problems getting the drug - something to do with money, funding or something Thanks  Post a Response

Re: Rituximab Therapy Posted by aquamarine on May 29, 2008, 2:51 pm, in reply to "Re: Rituximab Therapy" 82.43.222.62 --Previous Message-- : : : --Previous Message-- : Hi All : : Just to let you know that my daughter Hannah : who has steroid resistant nephrotic syndrome : for 2 1/2 yrs anad is aged 7 now is going to : be having a second lot of rituximab theraphy : on the 5th and 19th of march 08. She has her : first lots of this back in April 2006 and : that put her into remission after six weeks : and was the only thing to do so. She stayed : in remission for 15 months but relapsed last : july 07 and had been on many high steroids : and cyclopsorine since so i am glad that : finally our london hospital has agreed to : give her a second lot. I will keep you : posted to developments but fingers crossed : it will work as good as last time???? The : treatment does leave her feeling more tired : but after a short time i know from last time : she should pick up? : : : Hi there, are you able to tell me which : hospital- I know someone who needs this but : the hospital is having problems getting the : drug - something to do with money, funding : or something : Thanks :H Hi Just to let you know my daughter had the second lot of rituximab in march 08 at the Evalina Childrens Hospital in London,and this time it did not go as well -- Within the first ten minutes of the infusion starting she had severe stomach cramps and eventually passed out twice with pain so it took alot longer to do as they kept having to stop and start. Hannah was suppose to be having the second lot two weeks later but because it made her so unwell since having it done they decided not to do it but once they did blood results they realized she did not need it anyway as just the first lot had done what it was suppose to do. This time has certainly not been as successful energy wise but she went into remission within weeks again so thats good. But she is just picking up any bug that is going around so fingers crossed this will get better. We dont now have to see our consultant till aug 08 .  Post a Response

Re: Rituximab Therapy Posted by britfun67 on February 22, 2008, 9:51 am, in reply to "Rituximab Therapy" 65.184.21.76 Yes please keep us posted and I wish you so much love & luck xxxxxx I wonder if we have that therapy here in the USA? What exactly is it? --Previous Message-- : Hi All : : Just to let you know that my daughter Hannah : who has steroid resistant nephrotic syndrome : for 2 1/2 yrs anad is aged 7 now is going to : be having a second lot of rituximab theraphy : on the 5th and 19th of march 08. She has her : first lots of this back in April 2006 and : that put her into remission after six weeks : and was the only thing to do so. She stayed : in remission for 15 months but relapsed last : july 07 and had been on many high steroids : and cyclopsorine since so i am glad that : finally our london hospital has agreed to : give her a second lot. I will keep you : posted to developments but fingers crossed : it will work as good as last time???? The : treatment does leave her feeling more tired : but after a short time i know from last time : she should pick up? : :  Post a Response

Re: Rituximab Therapy Posted by aquamarine on February 26, 2008, 12:21 pm, in reply to "Re: Rituximab Therapy" 82.43.222.62 Hi The rituximab treatment is a liquid drug which is administered by a drip over several hours. The first time Hannah had it(April 06) it was done once a week for four weeks, this time it is being doubled up so it will be done only twice but still a infusion. So fingers crossed will keep you posted wendy --Previous Message-- : Yes please keep us posted and I wish you so : much love & luck xxxxxx I wonder if we : have that therapy here in the USA? What : exactly is it? : : --Previous Message-- : Hi All : : Just to let you know that my daughter Hannah : who has steroid resistant nephrotic syndrome : for 2 1/2 yrs anad is aged 7 now is going to : be having a second lot of rituximab theraphy : on the 5th and 19th of march 08. She has her : first lots of this back in April 2006 and : that put her into remission after six weeks : and was the only thing to do so. She stayed : in remission for 15 months but relapsed last : july 07 and had been on many high steroids : and cyclopsorine since so i am glad that : finally our london hospital has agreed to : give her a second lot. I will keep you : posted to developments but fingers crossed : it will work as good as last time???? The : treatment does leave her feeling more tired : but after a short time i know from last time : she should pick up? : : : :  Post a Response

     «Back to thread

Please consider supporting our mission