Rituximab or Remicade for Rheumatoid Arthritis RA

Posted by Alta Net @altabiznet, Mar 26 11:15am

I have tried Methotrexate, Actemra and Humira. Out of these three medications, Humira worked the best, and it was well tolerated. Methotrexate did not do much for my condition. Actemra worked, but with GI side effects.

My Rheumatology is considering Rituximab or Remicade. Please, share your experience with side effects and how much these drugs helped.

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Profile picture for Alta Net @altabiznet

@synthiame

I did not have Rinvoq. Please keep posting your experience with Rinvoq, e.g. how quickly you may get a response, potential toxicities, how it was managed, etc. Thank you for responding.

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@altabiznet It is highly recommended by all of my daughters doctors, she just can't take any of them. I like that it's a pill and not a big infusion. She is treated at. Cedars in Los Angles, and they see a lot of this stuff. Good luck to you

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Profile picture for judyresnick @judyresnick

My daughter has 5 auto immune diseases and she is still searching for the right drug for herself. She is on long term use of steroids, and they need to get her down to a low dose as it is destroying other parts of her. She took Remicade. She had a terrible allergic reaction while they were infusing. She started bleeding and unfortunately the doctor persisted that they finish the dose. It was really, really bad. But, she hasn't tolerated any of the newer drugs, but Humira worked well for her for years. It's well tolerated, and it's one of the oldest of. its class, so more time and research. If. that's a choice, I recommend asking your doctor. I think insurance covers it. For her, it stopped working, but it worked for a long time.. and she is really bad. Good luck. I am only on here because she won't and I am searching for her too. With 5, you can imagine Lupus, Crohns RA, Bechets, shorgrans.

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@judyresnick

I was on Humira for 4 months and it worked for me. Since I have scleroderma with arthritis and GI involvement, now Rituximab is one of my next options. I still think Humira is a better choice. It is no longer covered by insurance due to multiple biosimilars of the same class available at lower cost. I am trying to get it approved.
I have seen other responses with allergic reaction to Remicade. It is good to know.
It is unfortunate that your daughter cannot take Rinvoq - an oral drug with multiple indications similar to Humira.
There are also multiple clinical trials ongoing with CAR-T therapy in Lupus. Those treatments are known for neurotoxicity, but some oncology patients (where CAR-T has been used for years) report very positive results.
https://www.cartautoimmune.com/what-to-expect-from-car-t-cell-therapy
Many thanks for sharing your experience.

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I’ll relay my experiences for what may be helpful for your daughter. Im 68 so post menopausal which plays into things. I was diagnosed w Sjogrens Disease SD in 2019. Also test positive for RA but the SD has been the most active. Treated for flares w prednisone blasts and tapers. My autoimmune flares elevated in 2025 and by Sept I was diagnosed with interstitial lung disease ILD related to the SD attacking my lungs. Under Mayo care late 2025 I’m now down a path of seeing if rituximab will slow disease progression. I’m on supplemental oxygen for lungs.
Had two infusions in Dec and have weaned off prednisone for 7 weeks. The pred took my bones into osteoporosis territory but was very effective in controlling flare symptoms. So far both my ILD and inflammatory arthritis seem to be holding steady with rituximab as only therapy. Just had check w my local
rheumatologist w reassuring labs.
I’m back to Mayo in June for full work up re SD-ILD. If it’s working then will have next infusions in June after Mayo visit. I get my infusions at local center under my local rheumatologist care per Mayo pulmonology and rheumatology protocol and they did very thorough job of the pre-infusion prep with IV steroid, Benedryl and Tylenol with slow infusion rate. I tolerated both very well with no reactions.

All the best for your daughter and next steps. So little data to guide so many decisions especially with complex autoimmune. I’ll report back after June Mayo checkup to let you know how effective the rituximab is for my situation.

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I’ve been on Remicade for 12 years for Crohn’s and have never had any problems with it. However, I believe a higher dose would be necessary for RA. It is considered safe for most people despite the “black box” warning.

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Recently, Rituximab has been tried in clinical trials for ILD related to systemic sclerosis and skin thickening associated with scleroderma. Scleroderma also has inflammatory arthritis. The dose is different from RA: 375 mg per infusion, weekly for 4 weeks, repeat every 6 months. In clinical trials, they reported good results.

This is a link to 1-year proof of principle study with Rituximab in Scleroderma:
https://pmc.ncbi.nlm.nih.gov/articles/PMC2806066/

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Profile picture for loriach @loriach

I’ll relay my experiences for what may be helpful for your daughter. Im 68 so post menopausal which plays into things. I was diagnosed w Sjogrens Disease SD in 2019. Also test positive for RA but the SD has been the most active. Treated for flares w prednisone blasts and tapers. My autoimmune flares elevated in 2025 and by Sept I was diagnosed with interstitial lung disease ILD related to the SD attacking my lungs. Under Mayo care late 2025 I’m now down a path of seeing if rituximab will slow disease progression. I’m on supplemental oxygen for lungs.
Had two infusions in Dec and have weaned off prednisone for 7 weeks. The pred took my bones into osteoporosis territory but was very effective in controlling flare symptoms. So far both my ILD and inflammatory arthritis seem to be holding steady with rituximab as only therapy. Just had check w my local
rheumatologist w reassuring labs.
I’m back to Mayo in June for full work up re SD-ILD. If it’s working then will have next infusions in June after Mayo visit. I get my infusions at local center under my local rheumatologist care per Mayo pulmonology and rheumatology protocol and they did very thorough job of the pre-infusion prep with IV steroid, Benedryl and Tylenol with slow infusion rate. I tolerated both very well with no reactions.

All the best for your daughter and next steps. So little data to guide so many decisions especially with complex autoimmune. I’ll report back after June Mayo checkup to let you know how effective the rituximab is for my situation.

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@loriach best of luck to you

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Profile picture for prestol @prestol

I’ve been on Remicade for 12 years for Crohn’s and have never had any problems with it. However, I believe a higher dose would be necessary for RA. It is considered safe for most people despite the “black box” warning.

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@prestol

She is allergic to all of them. No just remicade . It’s a big problem. I am hopeful that this new Car t therapies for autoimmune disease

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Profile picture for judyresnick @judyresnick

@prestol

She is allergic to all of them. No just remicade . It’s a big problem. I am hopeful that this new Car t therapies for autoimmune disease

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@judyresnick

Is your daughter going into CAR-T therapy for Crohn's disease? At which institution?
Best of luck

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No,not yet. It's too early in its life for her. We are waiting and watching what happens during the trials.

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Profile picture for judyresnick @judyresnick

No,not yet. It's too early in its life for her. We are waiting and watching what happens during the trials.

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@judyresnick

I am also watching CAR-T therapies for systemic sclerosis. So far, some positive results have been reported in Phase I/II studies. However, toxicities like cytokine release syndrome CRS and ICANS (neurological deficits like aphasia) are a concern. Current clinical trials in autoimmune diseases report that all toxicities were reversable. However, CAR-Ts in oncology report more serious and long-lasting neurological deficits that may persist for months.
Something to think about.
With these known side effects, I already had three doctors recommending CAR-T as the best choice. I am still thinking and waiting for more data. Best wishes

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