Lambert-Eaton News Forums Forums Treating LEMS Immunosuppression Immunosupression or Not, That is the Question

  • Immunosupression or Not, That is the Question

    Posted by price-wooldridge on November 16, 2020 at 7:00 am

    The specter of doing immunosupression as part a LEMS treatment plan is on the table. What do you think? Are you doing this as part of your Lambert-Eaton regimen? The most commonly mentioned medicine I hear about is Rituximab. There are others. In this pandemic age the thought of immunosupression concerns me, yet the need to mitigate the effects of LEMS is strong. I would appreciate any discussion or insight you my have. For those not familiar with this line of treatment, here’s an article on it from last year.

    rdt replied 2 years, 11 months ago 3 Members · 4 Replies
  • 4 Replies
  • ashley-gregory

    November 16, 2020 at 10:59 am


    Thanks for bringing this topic up! Currently I am not on immunosuppression but I have a feeling that it will be in my near future. I’m interested to hear from someone who has tried Rituxan and hope we can get some feedback!

  • joanne-evans

    November 17, 2020 at 9:14 pm

    I am on ruzugi  (55 mg) and azathioprine. I could not tolerate prednisone. The side effects were to severe.

    I am taking 75 mg of azathioprine and have broken out in a rash. I am a bit about  worried taking it at this time.

    any thoughts?


    joanne Evans

  • price-wooldridge

    November 18, 2020 at 12:35 pm

    @joanneevans Hi Joanne! Just checked on this drug you mention which I hadn’t heard of, but I did recognize the brand name Imuran. A quick check and skin rash is a possible side effect. As Ashley suggested, you should report this to your prescribing physician. I hope it is helping you otherwise!

  • rdt

    January 3, 2021 at 1:24 pm

    I did a trial of IV Rituximab last year (2019). I personally felt 100x worse than my baseline and couldn’t continue with that therapy at all but I also have very complex issues in addition to my aggressive form of LEMS, so that might play a role.

    I’ve tried several immunosuppressive medications over the years and I’d say for me personally the one I had most benefit from was hydroxychloroquine (Plaquenil). I had to stop it (2020) while I underwent chemotherapy, but now that I just completed chemo, it’s been very difficult to get back on it since pharmacies in my area are refusing to fill it out of fear it’ll be used to treat covid. Very sad 😢…. I’ll keep trying though….

    keep us posted if you do get to try it! 👍🏼

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