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LUPUS UK
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Rituximab

Hi there eveyone

I wonder if anybody can help. I have CTD & RA and have been on Hydroxy since 2004 with various other medications such as Methotrexate (too may bad side effects), Azathioprine & Lefludomide which didn't have any affect at all. I am on long term steroids at the moment because nothing else seems to work but I have just got a new Consultant and she wants to put me on Rituximab infusions.

Does anyone know if these work and what are the side effects. I would be grateful for any feedback at all because they are wanting to start this in about 4 weeks if I give the go ahead.

Thanks a lot

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Well I only have RA (thankfully no other health issues) & am just approaching my 4th set of Rituximab infusions. This time around it's been wearing off faster....after 4 months I'm getting achey & stiff...but no flares, & i haven't needed any Delomedrine injections....so overall I feel they are successful....for me......like all the drugs we are prescribed it's a lottery if something suits you.......but you have to try it to find out

Apart from a few more headaches I have had no nasty side effects,...but others have....again it's a lottery.

I have just RTX .....it's usually prescribed together with Mtx, but I refused to have it with Mtx, so my Rheumy arranged for it to be just the RTX.

I'm just hoping it keeps me a well as I am now...apart from the aches & pains recently I am feeling the best I have felt for 18 years. I'm hoping they will go away after my next infusions in October.

If you do get prescribed RTX I hope it's successful for you.

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Hi , i have just finished 3rd set of rituximab infusions, i have primary sjogrens presenting with fatigue , enlarged lymph nodes , muscle and joint pain . The infusions have given me my life back as i can now function , im less tired my lymph nodes have reduced and pain has improved. Its not perfect but so much better . I haven't had major side effects, i do get a slow infusion as initially i had gastritis and this has helped , i do get very tired for a week or so afterwards as well. My white cell count has been low before I started any treatment and has dipped again but is being closely monitored. It is a big decision to make regarding starting the treatment , I hope all goes well for you . Best wishes 🌸🌸🌸🌸🌸. Do up date and let us know how you get on x

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