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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Rituximab Infusion

A MyLupusTeam Member asked a question 💭
Parsons, TN

My SLE is not responding to treatment. This has been going on for over a year. I'm currently on Benlysta injections, Plaquenil twice daily, and CellCept 2 tabs twice daily. I'm also on Prednisone 5mg daily as needed for flare activity. My Sed rate is up to 56 from 12 and CRP up to 17 from 13. My rheumatologist is wanting to set up a rituximab infusion. Has anyone taken this? Can you give me more info on this me?

May 1
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A MyLupusTeam Member

I would not be on all those meds if they were not working. I would insist on coming off of them before starting something new. All that is bad on your liver and kidneys. Why continue to take something that is not working? Good luck. Sending prayers.

May 1
MyLupusTeam

It sounds like a really frustrating year, and it makes complete sense to want to know more before starting something new. When SLE isn't responding to a combination of treatments and inflammation markers like Sed rate and CRP are climbing, rheumatologists sometimes turn to rituximab as a next step.

Rituximab is a biologic Show Full Answer

It sounds like a really frustrating year, and it makes complete sense to want to know more before starting something new. When SLE isn't responding to a combination of treatments and inflammation markers like Sed rate and CRP are climbing, rheumatologists sometimes turn to rituximab as a next step.

Rituximab is a biologic therapy given as an IV infusion in a clinic or doctor's office. While it isn't officially FDA-approved specifically for lupus, rheumatologists commonly use it "off-label" — meaning outside its approved purpose — particularly when other treatments haven't been effective enough.

It works by targeting and blocking specific inflammatory proteins in the immune system, which can help reduce lupus-related inflammation and prevent further damage. Some things worth knowing and discussing with your rheumatologist before starting:

- Common side effects include body pain and aching joints during or shortly after an infusion — these are usually mild and tend to resolve on their own
- Serious side effects are less common but can include increased risk of serious infections
- Infusion reactions can happen, so you'll be monitored closely during treatment
- Since you're already on immunosuppressants like CellCept and Prednisone, your doctor will want to carefully consider how rituximab interacts with your current regimen

It's really important to flag any new or worsening symptoms to your rheumatologist right away, especially given your current medication combination. MyLupusTeam members who have been in similar situations — where lupus wasn't responding and inflammation markers were rising — have shared that switching or adding treatments can feel daunting, but finding the right combination sometimes takes time and patience.

Your rheumatologist recommending rituximab after a year of inadequate response is a well-recognized approach, so you're in good hands asking these questions now. 💙

May 1
A MyLupusTeam Member

Hi! MaKaylaHicks, I know exactly how you feel . I thought things were being controlled. But I would get extremely tired, joint pain. I can tell when it was time for my treatment .I've been taking Rituxan for years . And now I have scarring, cyst and stones. The kidney doctor said we're going to keep a watchful eye on things. Because it hasn't gotten severe enough to do any biopies. I waiting for my new Rheumy doctor to decide next treatment steps.

August 19
A MyLupusTeam Member

Niranjana, I've become more symptomatic. My kidneys are starting to become involved- passing protein through urine. The myalgia and bone pain has worsened. I'm more fatigued, can't do regular day-to-day activities without feeling drained. I'm not sleeping, which is making my inflammation that much worse. My rheumatologist is concerned because since February 2025 my inflammation markers continue to rise. I have an appointment with my rheumatologist this week to discuss other treatment options.

May 4
A MyLupusTeam Member

McKayla, may I ask if the high ESR and CRP are the only issues or whether you have any active organ injury? Many lupus experts don't even regularly check ESR and CRP, as they often do NOT correlate with significant disease activity. For example, I had a very high sed rate between 80-100 for many years with no organ flares and just fatigue and joint problems. We don't want to be taking heavy-duty immunosuppressants like Rituxan for symptom treatment, as the risks outweigh the benefits.

If you don't have any active organ disease — or even if you do — please consider a second opinion, preferably from a university rheumatologist or a lupus center. If you're having ongoing organ injury, it's best not to delay treatment, as you know.

May 2

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