Hi all has anyone here experienced Rituximab infusions ? I have SLE , Dermatomyositis, Sjorgren's and a string of other ailments . I had my first infusion 4 July , second one 18 July I was told at the time that I tolerated it quite well as I understand some people don't . So far I have not felt any benefit , in fact I feel worse at the moment. How long do you think it should take before I feel any benefit from it . Would love to hear other experiences of it .many thanks Skid x

5 Replies

  • Hi skid

    Had first one end of april and it tooka couple of week to see a change. First the lymph nodes reduced in size which was a big deal for me, then did not feel so tired. Since that the pain has not been so bad however i think i will need another dose to hopefully see more improvement. I did feel quite unwell to start with but that has settled . I would advice you to ask re boost immune system( i forgot to) as i have had a few infections as white cells are low. I hope you get a good outcome and feel better soon 😀😀

  • Hi Skid, I had two Rituximab infusions back in February for SLE and like you I tolerated them fairly well. It took about twelve weeks for me to have any sign of improvement. My energy improved by a good 60% I would say and I generally ached less. Also not having consistently to fight depression. So wait awhile. things may improve

  • Every 6 months I got rituximab for two yrs for my Wegeners disease to help with my trachea stenosis ( narrowed windpipe ) it didn't do me any good but I handled it well better than a lot of chemo so good luck with the treatment.

  • Thank you all for your responses I guess I will just have to be patient Skid x

  • Hi Skid I had my first lot in June of 2015 and the second course February of this year. both times it went well whilst having the infusion but it took a few weeks to feel any benefits from it (I also felt worst before I started to feel better).

    I saw my Rheumy two weeks ago who has written me up for another lot soon. He said it is usually after the second or third dose that you really feel the benefit.

    Praying you will soon be feeling much better xx

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