Belimumab and Rituximab combo

[LydiaG]

Hello! I have SLE which and my rheumy has recently suggested Rituximab and Belimumab infusions combo (Rituxi every 6 months with Belimumab as maintenance in between, taken monthly). Has anyone had this done and what was your experience like?

I am having a bad period of flare ups this year including many admissions via A&E and my lupus seems to be resistant to my usual drugs (steroids, immunosuppresants, hydroxy) this year so this new combo has been suggested by my Rheumy.

I also did do ritixumab last two years which seemed to have help reduce my steroids to 10mg for about 6 months after each set of infusions but I am still getting the flare ups after that (at which point I then have to increase steroids again for some immediate action). My rheumy seems to think that this infusion combo will help get steroid intake to below 10mg and to stop taking steroids finally (I am waiting for this day to happen!!!! * hopes * )

I seem to fair ok with little side effects on rituximab and I have read about the risks/benefits of belimumab but I can't find a great deal about people's experiences on the Combo..this procedure seems fairly new so worries me!

Any thoughts would help tremendously! Thank you.

[_jenc_]

I can't help you sorry but I just wanted to send a wee hug! 💜 Hope you are okay x

[LydiaG in reply to _jenc_]

Thank you for the hug! It is what I needed xoxo :

[puffyface]

My rheumy talked about the benefit of the 2 of them together. She said that the body can be clever and get used to one...so when it gets hit with the other the immune response can't deal with it. I think they are both aimed at specific T cells and it sounds like a great combo. Good luck!

[LydiaG in reply to puffyface]

Thanks for this. I guess I can see the benefits theoretically but I am worried about the potential interactions or negative effects of having them together or so close together especially because it is a new procedure which hasn't been tried and tested for a long time. When something like this is available, I wonder if its better to take the leap for the chance to get better or not risk it?I guess if one feels that there are no longer any other options and you are desperate to feel better, then you would go for it... I am not sure if I am at that stage yet..!

[puffyface in reply to LydiaG]

It's your body, so only do what you want to it. Why do we have to make all of these awful decisions. Good luck 😊