Anyone on rituximab?: Hello, I am 8 years post... - NRAS

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Anyone on rituximab?


Hello, I am 8 years post diagnosis and have failed on sulphasalazine, humira and enbrel. My last enbrel was September and I have managed on methotrexate (10 mg injected) and occasional steroid injections while arrangements for rituximab were made. I had a steroid injection in January and started the Rituximab infusions at the end of February alongside the steroids which are given for side effects. My problem is that Rituximab can take 18-24 weeks to full effect and once the steroid wore off the RA returned at its worst and I have been in tremendous pain. This week I decided to contact rheumatology helpline as I felt I needed help to get through till there is a beneficial effect from the rituximab. Steroid would be my only saviour but rheumatology won't give me any, all they can offer is sending an appointment for a reassessment of my symptoms- any of you on this roundabout will know it can take forever. Is there anyone who has found themselves in this predicament and how did you cope till the Rituximab started to work?

4 Replies

It never worked for me.  I had the 2nd Ritux on 8th February and looks like I had some joint injections in May and June as my knees were a big issue then and started Tocilizuimab (sp) on 25th June.  Not a good time but not sure what else they can do because you have the drug in your system.  Hopefully your assessment will come soon and they will see how bad you are.  Farm

in reply to farm123

Thank you. Sorry to hear it was no good for you and the trials you had. Like you my knees are bad and they have been injected in the past on numerous occasions. Don't know whether the knees or the shoulders are the worst just now!! Hope you are settled successfully on your new treatment,

in reply to patty

The toc did not work either so I then started Abatacept which after taking nearly 8 months to really make a difference for me it is now doing reasonably well 2+ years later (although I should say very well compared to where I was but it is not perfect and I was told by my rheumy team that I could not expect that).

Rituximab didn't work for me neither did Enbrel or Humira.only been offered amitriptyline to help me sleep better with pain

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