KidComm Nephrotic Syndrome Parents Place : treating FSGS with Rituximob

[ Post a Response | 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.

treating FSGS with Rituximob

Posted by Mika on September 14, 2007, 7:52 pm
24.57.101.106

Hi everyone. Our son was diagnosed with acquired FSGS in april of this year. At the time he was 13 months old and started to develop severe swelling. To make a very long story short we spent three months at the hospital and were told that he has one of the most severe cases of FSGS they have ever seen. He did not respond to steroids and had a very bad reaction to cylclesporin which nearly killed him. He was put on dialasis to control the swelling which was out of control, even getting albumin three times a day did not help. Several other things were tried but nothing worked. We were running out of options and it was decided to try Rituximob. This medication had an amazing affect. He received four doses over four weeks and after the second dose we noticed some improvement. About three weeks after the last dose he no longer had any protein in his urine and his urine has been negative for protein for six weeks now. Right now he is on one blood pressure medication and also gets medication to prevent infection. We go for checkups and he gets iv ig
every six weeks. Other then that no one can tell there is anything wrong with him. He looks, acts and feel normal (his blood tests are also normal). We do not know how he will do long term but the doctors are hopeful that he will remain in remission. If your child has acquired
FSGS and it seems like nothing is working then ask your doctor about rituximob. I do not know if it will work in all cases but it is definately worth a try. good luck to all.
Dominika

Message Thread:

treating FSGS with Rituximob - Mika September 14, 2007, 7:52 pm
« Back to thread

Post a Response

Subject:

Message:

--Previous Message-- : Hi everyone. Our son was diagnosed with : acquired FSGS in april of this year. At the : time he was 13 months old and started to : develop severe swelling. To make a very : long story short we spent three months at : the hospital and were told that he has one : of the most severe cases of FSGS they have : ever seen. He did not respond to steroids : and had a very bad reaction to cylclesporin : which nearly killed him. He was put on : dialasis to control the swelling which was : out of control, even getting albumin three : times a day did not help. Several other : things were tried but nothing worked. We : were running out of options and it was : decided to try Rituximob. This medication : had an amazing affect. He received four : doses over four weeks and after the second : dose we noticed some improvement. About : three weeks after the last dose he no longer : had any protein in his urine and his urine : has been negative for protein for six weeks : now. Right now he is on one blood pressure : medication and also gets medication to : prevent infection. We go for checkups and : he gets iv ig : every six weeks. Other then that no one can : tell there is anything wrong with him. He : looks, acts and feel normal (his blood tests : are also normal). We do not know how he : will do long term but the doctors are : hopeful that he will remain in remission. : If your child has acquired : FSGS and it seems like nothing is working : then ask your doctor about rituximob. I do : not know if it will work in all cases but : it is definately worth a try. good luck to : all. : : Dominika :

Optional Link Title:
Optional Link URL:

By posting, you confirm that you have read and agreed to be bound by the board's usage terms.

Please consider supporting our mission

Kidcomm is an online resource for parents of children with nephrotic syndrome and other kidney diseases. Your donations help keep Kidcomm, it's email support groups and this bulletin board up and running. Please consider donating in order to help us help you.

Click here if you would like to donate

Vist our home site Kidcomm - An online resource for Parents.

Join one of our private email support groups for parents and kids!
See our selection of books to help you cope!

See our selection of books to help your child cope!