Rituxen for Lupus

[bteter]

Has anyone here taken Rituxen for Lupus? Has it helped? What side effects have you experienced?

[lupus-support1 Administrator]

Welcome!

Rituxan (rituximab) is a biologic agent used to treat lymphoma and rheumatoid arthritis. It is used to treat the most serious features of lupus when other therapies are not effective.

As with all medication, there are side effects but not everyone has all the side effects noted.

Are you going to start Rituximab?

With good wishes,

Ros

[bteter in reply to lupus-support1]

Yes, it looks like that's my only option anymore... apparently my liver is being ruined with the methotrexate and benlysta isn't an option anymore.

[lupus-support1 Administrator in reply to bteter]

I was also on MTX for 20+ years. It is a chemotherapy drug but at lower doses. I am now taking Rituximab (Mabthera) for SLE & because I have been diagnosed with Marginal Zone Lymphoma.

There are 2 regimes. One regime is specific for SLE/RA autoimmune diseases. The second, is for treatment for lymphoma/cancer. You will also be given cortico-steroids & medicine against an allergic response. No need to worry, the dose is given very slowly & under supervision.

I have just finished weekly Mabthera for 4 weeks. The side effects are fatigue & symptoms like the flu. No hair loss.

If you want to talk, please contact me.

With good wishes,

Ros

[bteter in reply to lupus-support1]

Thank you so much... my rheumy said it's time for me to go on full disability. She said I can't be around too many people, because it kills your immune system. Do you have any side effects?

[lupus-support1 Administrator in reply to bteter]

I am also "disabled" or rather, I have conditions that refer to disability! It took my GP years before I had to retire on medical grounds, but that doesn't mean an end to living or doing something useful & meaningful.

The side-effects are: fatigue (as if we don't have fatigue) - but it is acute and can take weeks. The other side effects are "flu-like symptoms", weakness or wobbly legs, some aches in legs. A temperature. A little nausea, but nothing like methotrexate tablets! 😀 If worried, speak to your doctor who will reassure you, "it's normal"!

Your first infusion will be done slowly - so be prepared! They will give you a blood test to make sure you are OK. You will receive steroid infusion & given medication to counter any reaction. I had none. Most do not.

Then rituximab infusion. They start VERY slowly & build up throughout the course of treatment. Nothing to worry about & your rheumatologist will explain everything but write down any questions you may have.

Please feel free to contact me anytime. It can feel traumatic but with a support system, it won't feel so onerous. I hope you also have family & friends to support you.

With good wishes,

Ros