• Posted by Dave White on March 14, 2022 at 5:41 pm

    I have LEMS and they just gave me a script for Clarithromycin and amoxicillin to treat a stomach bacteria
    Clarithromycin itself under that name is not on our do not take list yet it flagged the pharmacy that it can cause issues with Mg and of course when it flags for MG LEMS gets flagged as well.
    I found this from a Doctor here on this site and this was her statement “I found this today
    Antibiotics
    Doctors frequently prescribe antibiotics to treat infections. Some antibiotics can worsen LEMS symptoms because they have neuromuscular blocking effects. However, an infection can sometimes be worse. Your primary care physician will weigh the risks and benefits when prescribing a particular antibiotic.

    The antibiotics that are most likely to cause problems with LEMS are very strong antibiotics given by injection in the hospital.

    Ketek (telithromycin) is one antibiotic that doctors should never prescribe for patients with LEMS or other myasthenic conditions, as it has been associated with fatalities.”

    So I am unsure what to do as the other drug combination is in the same class
    Option 2 is
    There is a salvage therapy to includes amoxicillin and a drug typically use for tuberculosis called rifabutin

    Dorothy Dempsey replied 2 years, 1 month ago 6 Members · 13 Replies
  • 13 Replies
  • Price Wooldridge

    Member
    March 14, 2022 at 6:25 pm

    @davew41 Dave, thanks for your post. LEMS patients do need to be aware of medications or supplements that could possibly affect us.
    Just recently I had a skin tear on my forearm and went to urgent care to clean and bandage the area. My physician wanted to prescribe an antibiotic just in case. I showed her a list of antibiotics that could be problematic with LEMS and she prescribed around it. We also discussed that many of the problems are associated with higher doses usually given in a hospital setting.
    As with everything LEMS, what you take is always a discussion with your physician.

    • Eleanore Monty

      Member
      March 15, 2022 at 6:27 pm

      This is so interesting. Thank you!

      Can you kindly include the list of antibiotics or tell me where I can find them?
      My husband, recently diagnosed with LEMS, has a prescription for amoxicillin waiting at the pharmacy. It is a prevention for teeth cleaning to avoid bacteria entering his lungs due to aspiration issues.

      Our neurologist also mentioned concern with anesthesia.

  • Dave White

    Member
    March 16, 2022 at 7:38 am
  • Ashley

    Member
    March 16, 2022 at 7:44 am

    Hi @emonty !

    I have posted topics regarding medications to avoid with LEMS and anesthesia considerations for LEMS. I realize they may be hard to find, so you can find the links to both topics below! Hope this will answer your questions! If not, feel free to reach out to @pricewool or I!

    https://lamberteatonnews.com/forums/forums/topic/medications-to-avoid-in-lems-and-myasthenia/

    https://lamberteatonnews.com/forums/forums/topic/lems-and-anesthesia/

     

     

    Medications to avoid in LEMS (and Myasthenia)

  • Ruth Nixon

    Member
    March 16, 2022 at 4:37 pm

    I was given Clarithromycin last year in the Emergency Dept and immediately went into anaphylactic shock. I had to be given two doses of adrenaline to manage it. The doctors and I were unaware that it would cause problems.

    • Dave White

      Member
      March 16, 2022 at 4:38 pm

      I hope my list helps then maybe a mod can add it to their files or pin the topic?

    • Price Wooldridge

      Member
      March 16, 2022 at 4:57 pm

      @ruth It’s hard to be on top of letting the docs know about issues with meds when you’re coming into the ER. As mentioned previously, I did an Urgent Care visit recently, and as soon as antibiotics were mentioned, the doctor and I had a big discussion. I quickly found a list of possibly problematic antibiotics from a European MG website, I hurriedly Googled up. It pays to know drugs that could be at issue. I think I need to compile a list to keep with me.

      • Dave White

        Member
        March 16, 2022 at 5:54 pm

        This is exactly the problem; LEMS has no medical bracelet with this information tied to it.
        Say for example if you got into a car accident and needed surgery, if they do not know about LEMS and knock you out with the wrong chemical, you do not wake up.
        I had a close call as well
        2016 went to ER with a Appendicitis
        They did the scans and blood work and came back that it needed to come out ASAP… I said I have LEMS ya we know it is on your chart..
        I said I cannot just be knocked out with the normal drugs, O it has nothing here on that.. I asked them to look it up. Instead they send the guys who were going to do the surgery down I told them I need to talk to the anesthesiologist not them and they did not understand..
        After about 45 minutes the anesthesiologist came down . I asked have you worked with LEMS or MG she said no and had no experience
        So I had to be out on high power antibiotics for the evening until a anesthesiologist could come in the next morning and give me the proper chemical to do the job.
        So he careful have a list of everything on your phone and keep it handy..

        • Price Wooldridge

          Member
          March 16, 2022 at 10:11 pm

          @davew41 Dave, thanks for reminding us about a very important problem, entering the medical emergency system, unable to alert physicians or staff. I DO have a medical ID bracelet with my major problems, allergic to meds, and contact information. I need to wear it more often than I do.
          At one point Catalyst Pharmaceuticals gave our wallet cards with LEMS information you could present at the ER. That was a fantastic idea.

  • Ashley

    Member
    March 22, 2022 at 9:00 am

    Hi @davew41

    I do have a post about LEMS and anesthesia on the forum!

    You can check it out here:

    https://lamberteatonnews.com/forums/forums/topic/lems-and-anesthesia/

    The main thing to remember is that we should not have paralytics. My post discusses this in detail. Hope that helps!

    LEMS and Anesthesia

  • Dorothy Dempsey

    Member
    March 22, 2022 at 4:07 pm

    Another name for this is Biaxin which I am very allergic to!

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