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← Return to Trial for new epilepsy med
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Epilepsy & Seizures | Last Active: Aug 1 9:26am | Replies (21)
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Hi @cathy5161
Thanks for those updates.
I'm sorry to get this news from your trial! You gave it your best shot, sticking it out for over a month despite the bad side effects, the seizures you had, and the disturbing post-ictal symptoms. That takes incredible strength and determination! But your safety and well-being have to come first, and it sounds like your body was telling you "enough."
I hope you're starting to feel some relief now that you've stopped the trial, though I know it might still be too early to tell. Are you back on your previous medication, or are you and your doctor working on a different plan moving forward?
Take care of yourself, and please keep me posted on how you're doing.
Chris
Replies to "Hi @cathy5161 Thanks for those updates. I'm sorry to get this news from your trial! You..."
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Hi - I feel much better thank you. I had to keep taking my current seizure meds during the trial. I see my neurologist/autoimmune specialist next week. Would like to try slowly weaning off the XCOPRI and stopping the Actemra shots. Not sure what her position will be. I'm convinced im over-medicated and still not clear which is worse - the seizures or medial side effects. Interesting the trial took me off the trial med cold turkey...and had no sense of issues associated with quick withdrawal.