Any body had Rituximab

My Daughter (16) was diagnosied with SLE and Nephtis 4 just 12 months ago. since then she has exterme light senistive, raynaulds, liver troubles, the skin on her feet has come away showing nerve ending, in the last couple of weeks it has attacks muscels and joints. She has been treated with numerous drugs to many to note. but it has come to a point nothing is working and they want to try Rituximab. Can anybody provide any advise, be good or bad !

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  • I'm sorry, I haven't yet been on Rituximab but I just wanted to say that I so feel for you - it must be heartbreaking to see your little girl go through so much pain. I can't imagine how you two are coping, it sounds really serious, her situation. I hope Rituximab will help her, good luck with everything xx

  • Hi MiaMunch, Sorry to read about your daughter. I've had Rituximab and am currently waiting to have my 2nd set of infusions (you have them every 6 months) I received 1st set in Oct 2012 but haven't noticed any difference unfortunately. Apparently 2nd set will improve my condition : ) I have RA,SLE and possibly FB and am on a host of drugs; the main ones being Methotrexate, Hydroxychloroquine, Prednisolone, Folic Acid etc. I am suffering with terrible memory loss and brain fog, also blurred vision - all of which I had before but seem worse now. As always its hard to know whether drugs or the ilness are making you worse. Sending you both a big hug. Please feel free to message me if you feel the need, Jane xxx

  • Hi miamunch your poor daughter and for you how difficult it must be. Yes I have had Rituximab 4 infusions in all . I had no real side effects but it does take all day for the infusion as it is given very slowly to ensure that there are adverse effects . The unit I had it in was superb and I slept thru the day . It did make me feel better for a while so fingers crossed.

    Hope all goes well for her - Mops xx

  • I may be a little late in posting this reply- but, I too had Rituximab. It was offered to me as a last result when no other drugs were working in attempt to control a lupus rash that covered the whole of my body. Even high dose IV steroids weren't working. In the end I was given two infusions of Rituximab two weeks apart. That was all that was needed to bring the rash back under control. This was done five years ago and, touch wood, I haven't needed any further infusions :-)

    I wish you and your daughter and family lots of luck and love and hope it is as successful for you as it was me xxxxx

  • Thank you for yor reply. Mia has had the rituximab and went into anaphylactic shock. They are going to try it again ... Fingers crossed

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