Eculizumab (Soliris)?

I have Paroxysmal noctural hemoglobinuria (PNH) and have taken for a few months Eculizumab (Soliris). However , my blood status has deteriorated. Would you advise me to discontinue the medication? With best regards Walburga

Long-term use of eculizumab has some side effects, but this is not common, it may cause Anemia, Low white blood cell count, Nausea, vomiting, Urinary tract infection and so on.

hi hope all is well, I am also on soliris but for myasthenia gravis. there isnt much data about the drug and I dont know anyone else who is on it. I’m the first person in my region to receive soliris. how is your treatment going? and have you had any other side effects? I’m on week 5 and I haven’t seen any results yet.

Hi, are you in the UK?