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Has anyone had any success with retixmab for stoping protein loss? Husband will get 2nd round of it on Tuesday. There does not seem to be alot of information about it.
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retixmab
- By debmiller
- Posted June 7, 2009 at 11:07 am · 31 replies
- Shared with the public
Explore topics in this journal entry and replies:
CellCept Diabetes Fever Lasix Cytoxan Diovan Prednisone Edema
31 replies
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- Newest first
- By Mika
- Posted June 8, 2009 at 9:46 am
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Hi, do you mean rituximab? It worked very well for my son. There is information posed about it in the children with FSGS section.
- By briansmom
- Posted June 8, 2009 at 10:39 am
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I know what you mean Deb. I am also looking for info on it. My 10yr old has fsgs and they want to use it on him cause nothing else is working. I only found 2 people on the web that have used it and had success. I understand that you do get very sick off of it so I don't want to try it. Good luck to you and your husband. Deb
- By debmiller
- Posted June 9, 2009 at 8:14 pm
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My husband has not been sick at all from Retuximab- completed second round, now we will wait to see if it does anything.
- By santosdjja
- Posted June 10, 2009 at 7:11 am
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I had some success with this drug. I was spilling about 13 grams of protein before my treatment and that went down to 6 grams after the Rituxan. The treatment itself was no problem at all. A few aches and fatigue the next day but nothing a good nap didn't remedy. Good Luck!!
- By santosdjja
- Posted June 10, 2009 at 7:12 am
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Also, it took about 2 months to actually see any results for me so hang in there!
- By debmiller
- Posted June 10, 2009 at 11:52 am
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Thanks for the information-- it is difficult to wait to see results but now from your information I see it can take a few months. Thanks!
- By debmiller
- Posted June 10, 2009 at 11:53 am
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Did you or anyone have more than one round of this medicine?
- By Mika
- Posted June 10, 2009 at 1:04 pm
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My son became sick with FSGS in April 2007 (because he was so very sick they did kidney biopsy right away and it showed FSGS). He received rituximab in june/july 2007 because he did not respond to any medication and the edema was killing him (he was 13 months old when he got sick). He went into total remission 7 or 8 weeks after the first dose, the rituximab did not make him sick at all. He was in remission for six months without any other medication. Then he started spilling again. He was given one dose of rituximab in January 2008 and went into remission in two weeks and was also started on Cellcept. He has been in remission since then, thats almost 16 months now. He is doing very well, we still check him for protein often and I know that the future is uncertain but things are great now. Good luck.
- By debmiller
- Posted June 10, 2009 at 4:55 pm
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Wow! That is a great story. I am so thankful to hear this news! Thanks for your story.
- By debmiller
- Posted June 11, 2009 at 2:06 pm
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Is there two different medicines? One is called Rituxan and the one my husband took is called retuximab, or are they the same?....Rituxan....Retuximab ???
- By santosdjja
- Posted June 11, 2009 at 8:10 pm
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Same medication according to the Rituxan web page, www.rituxan.com
- By cgalitski
- Posted June 12, 2009 at 10:25 am
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My son did 4 infusions, once a week. He did not, stop spilling protein, he is still spilling a +2, +3. His labs show a great improvement. They just put him on Diovan, along with his other meds. It is supposed to help with the spilling of protein.
He had minimal side effects from it. Had some scratching in his throat, and they slowed it to a slower drip, which took hours. LOL. He was fatigue and a bit sore. Over all it went well. I'm not sure what our next step is. He goes back to Neph Doctor in 2 months. Labs drawn once a month.
- By debmiller
- Posted June 13, 2009 at 5:43 pm
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I am not familiar woith Diovan- let me know if you see positive results!
Good Luck!
- By debmiller
- Posted June 13, 2009 at 5:44 pm
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While the 2 months passed did you see gradual positive changes, or did the changes occur rapidly?
- By debmiller
- Posted June 13, 2009 at 5:46 pm
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Just did 2nd infusion on Tuesday of last week, so less than a week ago.
- By santosdjja
- Posted June 13, 2009 at 6:51 pm
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Honestly, the doctors had told me that it could take up to 3 months to see any results so I didn't test my protein at all during that time (I didn't want to get my hopes up). When I went in for my 8 week lab work is when we saw the protein decrease.
- By Ljillson
- Posted June 14, 2009 at 8:43 pm
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Hello. My son had Rituximab treatments a year ago. He went into remission for 6 months. We were thrilled. I hope you are success with your husbands treatments. Good Luck.
Ljillson (lori)
- By debmiller
- Posted June 14, 2009 at 8:47 pm
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Did you see remission right away? How many treatments did he do?
- By debmiller
- Posted June 14, 2009 at 8:49 pm
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But could you tell it was going sown, you have less swelling, right?
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