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Has anyone used CellCept (Mycophenolate) for LEMS?
CellCept (mycophenolate mofetil) is an immunosuppressive medication commonly used to prevent organ rejection and treat autoimmune diseases such as lupus, myasthenia gravis, and multiple sclerosis.
Some neurologists are now prescribing it off-label for LEMS, especially in cases that don’t respond well to first-line therapies like Firdapse, Mestinon, IVIG, or plasma exchange.
Since LEMS is autoimmune in most non-cancer cases, CellCept may help by suppressing the immune system and reducing the production of harmful antibodies that interfere with nerve-muscle communication. Because evidence is limited and responses vary, this is a great place to compare notes and support one another.
Note: Always consult with your medical team before considering any type of treatment.
If your neurologist has prescribed CellCept, how long have you been on it, and have you noticed any improvement in symptoms?
Did it reduce your need for other treatments (like IVIG or steroids), or do you notice any side effects?
Are you currently taking CellCept or considering it? Let’s discuss our experiences, questions, and concerns. Your input could really help someone else navigating their LEMS treatment options.
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6 Replies
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I have been on CellCept since Aug 1.
mycophenolate mofetil [GSMS] (CellCept), 500 mg, twice daily on empty stomach.
NO improvement noticed.
I wish I have an object measurement.
No reduction in Treatment. But it is too early to say. I only see my neurologist every 6 months.
The long duration is because I have had LEMS for 5 years and I am on max dose for everything,
No side effects noticed.
I ask my neurologist if the suppression will make me more susceptible to other germs.
She said Immune suppressions are the protocol for LEMS. This was the lowest dose.
Perhaps, if your immune system is producing 20 LEMS antibodies a day. And then you improve your immune system. The LEMS antibodies my increase to 25 LEMS antibodies a day. So, maybe suppressing the whole immune system, will decrease LEMS antibodies.
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Hi Dale,
I’ve heard that cellcept needs at least six months to become effective. I am not sure how true that is, but I would definitely give it a few more months! Sometimes these medications take time to adjust unfortunately.
Immunosuppression will make you more susceptible to germs/infections! Diligent hand hygiene, avoiding large crowds, and wearing a mask in public can help!
Many of us with LEMS are immunocompromised, although not all treatments for LEMS carry that side effect. Rituxan and cellcept are both immunosuppressants, and some claim that IVIG is as well!
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I took CellCept for a while but it did not agree with me, i threw up constantly. Also it did not seem to do much for the LEMS symptoms. I was on the full dose of Firdapse but I had to cut it in half because I had a seizure. I wish I could still get Ruzurgi it worked much better & I never had a seizure.
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Sorry to hear that you had stomach issues with cellcept! I haven’t tried cellcept but I had similar issues when I tried to take mestinon many years ago. It was intolerable!
How long were you taking it?
I hear your frustration about Firdapse, I think many others feel the same way. I was never able to try Ruzurgi so I can’t speak personally on it.
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What amount of Firdapse did you take before you had trouble with it? How much Ruzurgi did you take?
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Hello, my daughter took a low dose of Cellcept. She was on Firdapse and small dose of Prednisone when she started taking Cellcept. She felt improvement right away. With it she felt stronger. She told me she didn’t feel the wear off in between medications. I believe she took them for almost a year and a half. Now she is in Remission. She is not taking any medications.
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