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Lupus Online Support Group
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10/08/2008 15:13
jclinson
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Does anybody have any experience with taking Rituxan or Cytoxin for Lupus? Please let me know if anybody has any experience with this. My wife is supposed to start this type of treatment next week. Thanks in advance.

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11/10/2008 17:17
nickoa
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I don't have any experience but i am fixing to start the chemo myself in December and i am scared, I don't really know anything about it or the side effects, when i see my doctor in december i will make sure i get info on it. I too would like to know if it works.and what the side effects are. best of luck to your wife.

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11/28/2008 18:58
fibroforever
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Is this really out there for Lupus now? I've heard of this, but thought it was in the experimental stage.

Sorry, I don't know anything about this. But, jclinson, I wish your wife the best. And you nickoa too! I will keep you all in my thoughts. I hope it all goes well.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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11/28/2008 20:08
Cavaliermom
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I don't know about the Chemo for Lupus, but I have had a round of Chemo in the past. Like our wonderful disease, chemo affects us all differently. The most common side effect is weariness.. I think we are all familiar with that feeling. I wish your wife the best of luck and luck to you nickoa as well.
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12/01/2008 13:08
nicunurse74
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I have had both Cytoxan and Rituxan for lupus nephritis. My counts have been great! Side effects can be daunting, but I took Kytril instead of Zofran for nausea and never experienced any vomiting. Hot flashes with Cytoxan are not rare, and can cause hair to fall out. Mine thinned a LOT and I had bald spots ....wore turbans and scarves, never really an issue with me. Rituxan is a biotherapy and not a chemotherapy, and does not cause hair loss, etc. Everyone is different and side effects are never the same from patient to patient. Best wishes for your health! if I can help in any way, give me a holler!

Post edited by: nicunurse74, at: 12/01/2008 13:09

"He has achieved much who has lived well, laughed often, and loved much."
-Mrs. A.J. Stanley
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12/03/2008 15:26
nickoa
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hmmm sounds like its worth trying so im gonna tell my speacialst that i will definatley try it out, which one do you recommend? the Cytoxa or the Rituxan?

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12/03/2008 16:09
nicunurse74
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Well, I am doing the combo study at the moment. I did Cytoxan first. I did IV dosing, because the oral dosing made my kidneys bleed. Be aware that you need excellent diligence while taking Cytoxan to maintain proper liquid intake in a 24 hour period. That is why I had to end up with the IV dosing along with mesna and kytril. These meds are used treat current lupus nephritis.
"He has achieved much who has lived well, laughed often, and loved much."
-Mrs. A.J. Stanley
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12/03/2008 16:29
jclinson
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Thanks to all of you. My wife will start her treatment, after all, on December 30. We are hoping for the best and I will let you all know how it goes. I am trying to get her on this site so you may be hearing from her too. Thanks again.

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12/06/2008 19:28
laura61
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My 15 year old daughter has had 4 infusions of cytoxen and she still is showing alot protein and blood in urine. The rheamatolgist wants to increase the dose of cytoxan on Dec 17th. Originally, they thought she would only need 6 doses in all. Now,they are increasing it and talking about more doses. If you have had cytoxan, how many doses in all did you have to get the kidneys healthy? She had servere kidney involvement.
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12/07/2008 19:59
tsims6
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I'm glad to hear that the Rituxan is work well for every one, I'm suppose to be starting it soon. I'm currently having infusions every two weeks of prednisone and methotrexate, the side affects is starting to bother me alot more than before and is becoming harder to tolerate.
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