Just learning: Hello all I have recently joined, I... - LUPUS UK

LUPUS UK

32,125 members28,443 posts

Just learning

HelenL75 profile image
5 Replies

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

Written by
HelenL75 profile image
HelenL75
To view profiles and participate in discussions please or .
Read more about...
5 Replies
weathervane profile image
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 profile image
HelenL75 in reply to weathervane

Thanks weathervane for the support

Paul_Howard profile image
Paul_HowardPartnerLUPUS 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 profile image
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 profile image
HelenL75 in reply to Melba1

Thanks Melba1

Not what you're looking for?

You may also like...

Heat and flare ups- still learning!

This is all very new to me and still working out the triggers for flare ups. Stress and tiredness...

Learning to validate myself

I wanted to quickly get on here and share some thoughts. I have struggled with my health since I...

Just an introduction

Hi everyone! Hope y'll doing just fine. Let me introduce myself. You guys can call me Xechoo. I...

Just diagnosed

Hi there. I was just diagnosed with. Lupus a couple of days before Christmas and it's been a roller...

Just joined.

Although I've been a member of Lupus UK for 12 yrs, I've never heard of healthunlocked until...