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Has anyone tried Rituxan (Rituximab) for LEMS?
Rituxan (rituximab) is a medication used to treat various autoimmune conditions, including certain cancers, rheumatoid arthritis, and even some cases of myasthenia gravis. Some doctors are now exploring its use for Lambert-Eaton Myasthenic Syndrome (LEMS), especially in patients who don’t respond well to first-line treatments like Firdapse (amifampridine), Mestinon, IVIG, or plasma exchange.
Because Rituxan targets B-cells in the immune system, it may help reduce the autoimmune activity thought to be involved in LEMS. But it’s still considered off-label and isn’t widely used for LEMS yet, so information is limited—and patient experiences can be incredibly valuable.
Why This Matters:
Rituxan may be an option for people with treatment-resistant or more aggressive LEMS. Its immune-modulating effects might reduce the production of antibodies that block calcium channels at the neuromuscular junction.Understanding risks vs. benefits is key—especially when balancing immune suppression with quality of life.
Note:
Rituxan is a powerful drug that suppresses part of your immune system, so infection risk and long-term monitoring are important topics to discuss with your care team. It’s not FDA-approved for LEMS, and insurance coverage may vary.Have you used Rituxan or are you considering it? Share your story, questions, or advice. Your insight might help someone else facing a tough treatment decision.
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7 Replies
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Yes! I need 120 mg of Firdapse a day, indica with specific terpenes inhaled each night, and Rituxan for quality of life. I have in-depth knowledge of Rituxan based on working with my medical team (two neuromuscular specialists and two rheumatologists). I understand dosing decisions, time for full impact, lab/symptom monitoring, and associated risks. It’s too much to type, but feel free to reach out.
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Thank you for your insight! Do you have any advice for patients who may be starting Rituxan? Do you experience any side effects?
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I have been on Rituxan infusions since September 2021. I had reactions to IVIG, so I worked with my neurologist to try the Rituxan. I started at four month intervals and am now at five month repeats with the goal of six months or more between treatments. I have observed significant improvement in physical capabilities and decrease in other symptoms. My tests for antibodies were negative, as was monitoring for SCLC. I am due for my next infusion in October. I typically have a couple of low energy days right after the infusion but then I pick up and can do many things that I previously could not attempt before the Rituxan. Otherwise, I have not had any detectable side effects of the infusions. I take 90mg of Firdapse per day, 15mg every four hours. I also take one Mestinon ER 180mg every twelve hours.
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Thank you so much for all of your insight! I am thrilled to hear that you are doing well on Rituxan and don’t experience many side effects.
Do you have any advice for patients who may be starting Rituxan?
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While I have no personal experience, I do know a number of LEMS patients who use it in their treatment plan and have talked with them about it. Their results have been positive. And this includes a patient at age 60, one in their late 40’s, and a young adult, age 18. As you mention, we all are different and have different medical challenges, and there are known risks with use of this treatment. Any recommendation for adding it to a treatment plan should be discussed with a person’s medical and neurology team to weigh the risk reward possibilities. There are good stories of positive outcomes when it’s used by LEMS patients, so this is a good topic.
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Hey @Price Wooldridge
Thank you for your insight!! It is promising to hear so many success stories with Rituxan for LEMS! This treatment may be something I consider when/if IVIG loses its effectiveness so it’s comforting to hear.
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In 2004 I was diagnosed with Lymphoma. A small tumor in the upper left lobe of my lung. I was treated with Rituxan, which was not used for autoimmune diseases at the time. I had infusions several times after that. When I was diagnosed with LEMS in 2020, my neurologist and my oncologist agreed that it would be prudent to have Rituxan infusions prophylactically since LEMS can be a precursor to small cell lung cancer. I do not have SCLC, but the Rituxan was given as a preventative. I do not have regular infusions like those who have IVIG.
As far as insurance is concerned, my oncologist handles the infusions since I have had this previously for Lymphoma. I know it is off label for LEMs, so your doctor would have to make inquiries with your insurance company. I have had no ill effects from the infusions.
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