Getting weaker and weaker on Firdapse

[Ginny Boynton]

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?

[Jessica Jones]

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]

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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