Just learning

[HelenL75]

Hello all

I have recently joined, I was diagnosed with SLE in the middle of last year, docs still not sussed my treatment so recently had rituximab drip - been four weeks and not one sign of any improvement - I know doc said could take 2-16 weeks to work - patience is not a virtue I possess much of so was just wondering am positive experiences out there from this treatment?

Thanks

[weathervane]

Hi Helen , i have Sjögrens and i was started on rituximab 2 years ago . After the first it did take the 12 weeks before I noticed a change, particularly in my lymph nodes which were all really enlarged. After the second set of infusions I found even more of an improvement. The infusions have made suich a difference to me in regards to the muscle and joint pain and exhaustion . I find i can tolerate the infusion better if the drip is slowed down. I hope that it starts to kick in soon and you get real benefits from the treatment. Best wishes 🌸

[HelenL75 in reply to weathervane]

Thanks weathervane for the support

[Paul_Howard Partner LUPUS UK]

Hi HelenL75 ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

I have heard quite a few positive experiences of rituximab in helping to alleviate lupus symptoms, but it does often take a while before it is effective, so unfortunately you may need to be patient a bit longer.

Lots of people have shared their experiences of this treatment on this site in the past. You can read some of these by taking a look here - healthunlocked.com/search/r...

[Melba1]

Hello, I had 2 rituximab infusions end of January and started to really feel the benefit after about 8 weeks so hang on in there and hopefully you will feel the benefit soon too. It worked very well for my CNS lupus and also I have absolutely no pain at all! I didn’t realise my joints had hurt so much for so many years until the pain was gone! I still have some fatigue but it’s improving every week and I think some fatigue is a part of life for most of us regardless of treatment.

Hope it works soon

X

[HelenL75 in reply to Melba1]

Thanks Melba1