Rituximab - Its working :)

Just wanted to share my experience for anyone that is about to start on Rituximab...I had my first infusions in April, 2 weeks apart and felt so ill for 2 weeks after each one. Seemed to have pain in every joint in my body. I struggled through May and June with no signs of improvement at all. At the end of June, I cried in my rheumatologists office when she asked me how I was. I was literally on my knees. She and my wonderful nurse said hang in there, it will kick in. Don't give up. I had a steroid injection to help. Then the 2nd week in August, I realised that I had had 4 late nights in a row and I was still functioning and not in awful pain. 4 days turned into 2 weeks and then into 6 weeks. I still have some swelling but not the relentless pain. I was so excited that I decided to paint all the rooms in the downstairs of my house! May have overdone it slightly ;) my shoulder and hands were not amused but in general I felt on top of the world. Saw my nurse today and my bloods are showing this improvement too. I am scheduled for next infusions at the end of October. I just wanted to tell anyone who was where I was 3 months ago - not to give up and it might work for you like it seems to be for me :) My consultant and specialist nurse are 2 of the most amazing people and I am so grateful for having them both help me through this nightmare of a 3 year journey.

4 Replies

  • I had similar experience from infusion in may, bad then better, then bit more better but not quite at painting level yet! Good luck with next one my rheumy app has been delayed twice so dont know when next infusion 😀

  • Fantastic that it's worked for you! While the forum tends to get troubles with meds, there should be a 'Success!' thread so folk like me can take heart that something will work. Only on HCQ & MTX at the moment but they aren't working at all. In fact, I have had increasing pain in my feet and ankles now. By the end of the day, I'm hobbling about.

    And it sounds like you have a great team looking after you too. Thanks for the post!

  • Thank you so much for this I had my first infusion end of July and the second mid August I still feel awful. This message of yours has given me the will to keep going. I think i was expecting a bit of a miracle and need to be more patient. So thanks again

  • Hi Vicky, I know exactly how you are feeling. I kept waiting for a miracle every day. Felt worse than before the infusions!!! Hang in there. Please keep in touch on here if it helps...happy to motivate you along...X

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