Hi everyone im new on here and would love to hear other peoples advice. I have lupus overlap and was seriously ill 3 years ago with it. I recovered due to given a VERY large amount of methylprednislone, which was the worst experience of my life! And then given rituximab. 3 years on ive have not had to take any medication at all which has been great. Recently a 24hour urine test shows protein leak so i now have mild kidney involvment and consultant wants to give me the rituximab again, im just so weary of it. Has anyone else had it? What are your thoughts on rituximab? I have just been given hydroxychloroquine for the time being. Thanks

8 Replies

  • I have rituximab for My kidneys I was worried about having it but I have been fine if the doctors think it will help you should go for it, hqv3 you had it for kidneys before? X

  • Thanks for reply. Yes its for my kidneys. Im just worried about the side effects seems very drastic. X

  • Ok I never suffered with side effects it is boring sitting up the hospital having treatment I thought it was not working for me as I still get pain in kidneys but urine tests are coming back that there is not a lot of protein in my urine which is good I think you should have the treatment

  • Glad it has worked for you. My consultant going to get back to me monday with my blood results. Im booked in for rituximab on 15th august. Do you have it regularly? X

  • I have it done every 6months but got my last lot in 5months hopefully doctor said they might up it tho

  • Wow thats alot. Will see what my consultant says monday. Does lupus effect you any other way? X

  • Yh it is a lot I was having a 2yr course, yh it does it effects muscles, joimts, my lip can have a swelling, my fingers swell up, mouth ulcers, hair loss, makes me very tired all the time and in constant pain and the meds I am on suppress my immune system, how does it effect you? X

  • Its effects my joints, fatigue. It was just 3 years ago i had a really bad flare were i came out in a rash and had renal and lung involvement nearly ended up in intensive care. But touch wood ive been fine since. Just the kidney involvment starting to show now.

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