Retuxibab and lupus

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Catty100
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/4/2014 3:48 AM (GMT -6)   
Hi

Has anyone had the retuxibab infusion for SLE? A family member is about to have this and I wondered if this had worked with a remission or just a slight improvement. Seems to be the only hope left, so very frustrating with waiting for treatments for Lupus. There seems no rush but life has been on hold for 7 years now with symptoms only getting worse. Just wanting a glimmer of hope for her.

Talldoode
New Member


Date Joined Jun 2014
Total Posts : 16
   Posted 6/11/2014 6:29 PM (GMT -6)   
Hi Cathy,

I had my first infusion last week. Second in the series is tomorrow. Then four months between them. After one dose I can honestly say I do not feel better nor worse - but it can take a while for it to impact symptoms. My rheumy is using Rituxan to help my kidneys since even after Cytoxan for two years I still have some protein. I tried Cellcept but it was making me pretty miserable and I wasnt able to get to the full dose she wanted me on. Any time I go above 1500mg I just feel like death on a cracker. Crushing fatigue, nausea, poor sleep. She wanted me at 3000. So we are trying the Rituxan instead.

While she is hoping for full remission (and has had success with Rituxan and remission) she told me to plan on staying on it the rest of my life if it works just because of my kidney involvement. I dont know if your family member has kidney issues - if not then Rituxan could put the lupus into remission. But you have to be very careful with "remission". I was in remission after being diagnosed five years ago and for two years I was fine and felt great. I seriously felt almost normal. Then noticed I was urinating a lot (like every 2 hours day and night) even though I felt great. PCP did a UA and I was spilling huge protein. And it came on in a few months. So even if your family member goes into remission make sure you are following up with the Dr. regularly.

One item to note - I have not (knock on wood) had any side effects at all from the Rituxan. I still have pretty bad fatigue but I am also trying to drop from 10mg Pred to 5mg Pred and that could be part of it. I find myself more nauseated more often but not sure I can blame the Rituxan for that. Could still be the Cellcept I am on.

Sorry for the long note. I hope I have helped. Please post in a few months and let us know how your family member is doing.

Best.

dave
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