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  • Getting weaker and weaker on Firdapse

    Posted by ginny-boynton on May 24, 2023 at 8:37 am

    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?

    alan-stone replied 6 months ago 3 Members · 2 Replies
  • 2 Replies
  • jessica-jones

    May 26, 2023 at 7:01 pm

    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.

  • alan-stone

    May 30, 2023 at 10:39 am

    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.

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