Hi all. I have a query re a change in medication regime ,

I am about to undergo a transition from cyclophosphomide to rituximab .I have so far had 8 infusions if cyclo however the W.G is still active following a relapse which began in april 2011 .I wondered if anyone had experienced a transition in this way with the plan being that I have 1 more infusion of cyclo 1 week followed by 2 infusions of rituximab 1 the week after and the next 10 days after that. The Cyclo really wipes me out for 2 or 3 weeks . The consultant is obviously confident that there will be a good outcome however I wondered what a patients experience would be .Thanks in anticipation of any feed back

Carol

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  • Hi Carol

    I have only had one round of cyclo back in Oct 2009, they decided straight away it hadn't helped and got me approved for Rituximab, which I had in Jan 2010.

    Since then I have also had it in Sept 2010 and Oct 2011. The rheumy's plan is to give it to me annually as a maintenance.

    The neuro thinks I should go back to cyclo as he thinks they made the switch too quick.

    Personally for me I haven't felt better but I think I'm a bit of an oddity in that the rheumy and neuro disagree on the vasculitis (I've put posts on about this), I think maybe the Rituximab is just letting things simmering gently rather than boil over, if that makes sense.

    I know from other people having the Rituixmab at the same times as me that the majority have had great results and would recommend it, also I don't think it has the same toxicity as cyclo (sure others on here can help with that).

    When I have Rituximab they put two weeks between the infusions but on one of them it was three weeks due to blood count.

    For me what I remember was that the cyclo did hit me much more than I thought it would, the Rituximab also makes me tired but not sure if that is because I am diabetic and they don't give me as much steroid infusion as non diabetics.

    I would plan on being as wiped out with the Rituximab as you are with the cyclo and then anything else is a bonus .

    Not sure if I've helped but hope so, I know there are a few people on here who have experience of both drugs and I'm sure they will respond.

    Louise

  • Thanks Louise ,I,m just trying to prepare myself for the next onslaught of debility .I confess to being a little apprehensive re having all the treatment in close proximity but do trust the consultant .Be sure my bed is inviting and ready as thats all I seem to be doing at present .Once again thanks .

    Carol

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