Lambert-Eaton News Forums Forums General Questions and Topics Would you participate in a clinical trial? Pt. 2

  • Would you participate in a clinical trial? Pt. 2

    Posted by price-wooldridge on May 17, 2023 at 7:00 am

    As mentioned in my previous topic, there is a drug in pre-clinical study for LEMS that may, at some point, do a full clinical trial for FDA approval. The drug is efgartigimod.

    Here are some additional factors to think about before saying yes, or no.

    Will I receive the investigational drug or a placebo?

    How will the treatment be given to me? (e.g. pill, injection, infusion)

    How long will I receive the treatment?

    Will I have to stop my current treatment?

    What tests and treatments will I have to undergo?

    I ask the question again, given that LEMS patients will be asked to participate in these trials. Have you considered whether you might opt in?

    price-wooldridge replied 6 months, 2 weeks ago 2 Members · 2 Replies
  • 2 Replies
  • rdt

    Member
    May 19, 2023 at 2:44 pm

    YES! I just had a new consultation with a new neuromuscular neurologist, since my current neuro doesn’t have any more LEMS treatments options for me.
    The new neuro plans to reach out the pharmaceutical company Argenx directly to see if their FDA approved Vyvgart could be used for me as a single use patient study instead of waiting for it to go through patient trial in LEMS population. I should find out by September. I truly hope they will consider it seriously! Will keep everyone posted since I have failed all the other traditional LEMs treatment options unfortunately. If anyone else does enroll in a LEMs clinical trial please post or message me!
    thanks !!

    • price-wooldridge

      Member
      May 20, 2023 at 8:00 am

      Please keep us posted on your efforts.

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