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  • How has your LEMS treatment changed since diagnosis?

    Posted by Ashley on December 1, 2023 at 7:11 am

    Hey all! 

     

    Last week, @Lori Dunham  wrote an article about how much has changed in the four years since her daughter’s  LEMS diagnosis. 

     

    This article made me think about my diagnosis in 2016 and how much has changed for me as well! 

     

    Have you had many treatment changes in the last four years? OR big changes in treatment since your LEMS diagnosis? 

     

    Lori states, Nowadays, our LEMS journey feels more like smoldering embers rather than a raging fire, but the disease is still very much a part of our lives.”

     

    I really like this analogy as it holds true for me as well. Sometimes, the wind (flares) can make the fire seem bigger for a period of time, but usually, it’s manageable. 

     

    I know many of you are at the beginning of your LEMS journey, figuring out what life will look like, and navigating the treatment options to find what’s best for you! 

     

    Lori closes the article with  “Today, if you’re at the beginning of this journey and feel hopeless and alone, know that others have gone before you. They’re fighting a war that’s similar to yours. The mountain you face may seem insurmountable, but with time, things can get better. Most importantly, you are not alone.”

     

    Do you have any takeaways from this column?

     

    ginny-boynton replied 2 months, 4 weeks ago 2 Members · 4 Replies
  • 4 Replies
  • ginny-boynton

    Member
    December 4, 2023 at 1:22 pm

    My treatment has changed from taking Ruzurgi to Firdpase, and it has been much less effective more me. I was able to walk on the Great Wall and Macchu Picchu with hiking sticks on Ruzurgi and now I’m having to use my walker to get around my bathroom while taking Firdapse.

    Initially Catalyst indicated it was going to make Ruzurgi for those of us who do better on it, but recently it has given me the impression that it is not planning on doing that, and I’m extremely depressed with what the change is doing to my life and the lives of my family members and friends.

    This is so unnecessary when a drug exists which helps some patients more. Is anyone else having this issue? Does anyone understand why Catalyst is refusing to help patients who do better on Ruzurgi?

    Firdapse has a half life of 1.5 – 2.5 hours, and Ruzurgi’s is 3.5 – 4.5, With that factor as well as the addition of phosphate salt to Firdapse it seems obvious that the two drugs would not react the same.

    I would appreciate any insight into whether Catalyst is going to help us by making Ruzurgi or whether there is something we can do to convince them of the need for it if they truly want to be called “patient centric”?

  • ginny-boynton

    Member
    December 4, 2023 at 1:23 pm

    And I forgot to check the box which would alert me to replies so I’m writing another post.

    • Ashley

      Member
      December 6, 2023 at 7:51 am

      Hi Ginny,

      I’m sorry to hear that the switch from Ruzurgi to Firdapse hasn’t been so smooth and/or effective for you.

      Unfortunately, I don’t have those answers for you. We (BioNews Services/Lambert-Eaton News) is not affiliated with Catalyst. I wish I had the answer to your questions about Ruzurgi but I do not. I cannot speak to the effectiveness of either medication.

      Personally, I wasn’t able to try Ruzurgi so I cannot make comparisons between the two medications.

  • ginny-boynton

    Member
    December 6, 2023 at 2:24 pm

    I’m sorry you weren’t able to try Ruzurgi. Some people seem to do better on Firdapse and some on Ruzurgi. It would be preferable if we could each try both and decide which does a more effective job for us.

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