Rituximab and flare up

[BookishVibes]

Good morning everyone 😊

I had rituximab last in spring 2020 (my first ever) and this last winter I've had a flare up of my symptoms. Some of my symptoms are quite painful, such as my hands/fingers and knees and a rash on my face, neck, arm, toes. My SLEDAI was rated as 10 when I was in clinic and I've been approved for more rituximab, with the aim to drop my steroids further in August, as I've been on them since 2004 and I'd like to reduce further than the 7.5mg I'm on (I'm also on 200mg Hydroxychloroquine). I have no major organ involvement.

I'd love to hear some thoughts. Each time in the past few years I've had a flare up each one has been worse and worse. According to my recent blood tests each time I've had blood tests done since Dec 2023 my c3 and c4 have dropped further and further and now reached the very bottom end of normal, with an abnormally high immunoglobulin G. My ESR is 35. CRP normal. My prior to this one blood tests I have always been strongly ANA positive (I don't know my ANA on these blood tests). I'm positive for Anti RO and Anti LA and Anti Sm in the past blood tests. However in the past week I've started to feel a bit better and the rash is improving on my face. Should I still go ahead with the rituximab? Of course I have no idea if things will get worse again or keep getting better.

I'm also lymphopenic, my T cell scores are low, although being on long term Prednisolone impacts these scores a bit apparently.

Any thoughts would be appreciated.

Thanks 😊

BookishVibes xx

[Prilo]

hello, I will suggest you go ahead with rituximab. I was diagnosed in 2023 and I had the first rituximab in 2023 and other one in 2024 and I am currently in clinical remission

[NewEngland3]

what dose are you getting?

[Gooner786]

Hi, sounds like the Rituximab suited you. My younger sister has a rare combination of Lupus which is very aggressive, and has to have infusions every 9 months as her c3 and c4 start recovering before the 9 months is complete. Keep an eye on the prednisolone as she has lost bone density and a load of other side effects due to this. I’d say if they’ve offered you the infusion perhaps consider having it to keep symptoms at bay. All the best 🙏🏽