My sister has been on Soliris for several months and has shone marked improvement. A month ago she suffered a seizure that resulted in a hospital stay for more than a month and because of the hospital limitations the drug could not be administered. Her improvement from the seizure has been very successful (with intense rehab and therapy) and her cognitive awareness and general demeanor has markedly improved. Now the family (including my sister) is wondering should she restart Soliris and possibly lose her positive awareness or discontinue the drug? What risk is involved stopping? Her medical stats are currently all good.
I've advised the family (I live on the opposite coast) to sit down with her doctors to hear the range of possibilities and options, but I was wondering if anyone out there had a similar decision to make?
Thanks in advance. Rebecca
Thanks for the quick response. Tough decisions but appointment has been made with the doctor before deciding anything.