Viewing 2 reply threads
  • Author
    Posts
    • #20786
      Ginny Boynton
      Participant

        Since I switched to Firdapse, I have been getting weaker and weaker. I was on 90 mg of Ruzurgi, and when I switched to Firdpase, I took the maximum amount of 80 mg. I was then permitted to go up to 90 mg. but I continued to get weaker. Then I had a seizure so I had to go back down to 80 mg. Not only am I having to use a lower amount of Firdapse than I did Ruzurgi, but it has a shorter half life.
        I have gone from only using my walker to sit on and take photographs at sporting events and using my scooter to go distances – such as taking photographs at different places on cross country courses, to having to use my walker to get around the bathroom.
        My neurologist and I have been trying to decide what to do for me to get stronger, and his most recent suggestion was Cell cept. Does anyone here have any experience with Cell Cept?

      • #20793
        Jessica Jones
        Participant

          I also do not like Firdapse as well as Ruzurgi… And I have tried Cellcept, but it has been years. I didn’t notice any improvement on it. The only immunosuppressant that has been effective for me is Rituxan. I take it in conjunction with IVIG and these, along with oral Mestinon and Firdapse, have my condition pretty well controlled.

        • #20796
          Alan Stone
          Participant

            Ginny, I also am getting the impression that Firdapse efficacy is slowly waning. Been taking 20 mgs 3 times daily since 6/18 per my neurologist’s suggestion. I feel like 4 times daily might improve symptoms. I intend to suggest this to neuro on 05/23 ay appointment.

        Viewing 2 reply threads
        • You must be logged in to reply to this topic.

        ©2023 KLEO Template a premium and multipurpose theme from Seventh Queen

        CONTACT US

        We're not around right now. But you can send us an email and we'll get back to you, asap.

        Sending

        Log in with your credentials

        or    

        Forgot your details?

        Create Account