Eculizumab for Paroxysmal Nocturnal Hemoglobinuria User Reviews

• Anonymous
• Taken for 1 to 2 years
• September 2, 2020

Eculizumab "This drug is for paroxysmal nocturnal hemoglobinuria (PNH), but the disease is heterogeneous. I feel worse being on it. Doctors push it, patients just do it. It is too much work. I never should have started."

• rwm...
• Taken for 1 to 6 months
• December 31, 2024

Eculizumab "Immediate improvement after 2 infusions, with an increase in hemoglobin / hematocrit. After vaccines for HepA and HepB 2 weeks prior to receiving treatment, I was given 4 weekly infusions, then 4 bi-weekly infusions which brought all my numbers into normal range. I was moved to treatments every 8 weeks, which continue. First 4 infusions were 600 mg. Infusions following have been 900 mg. I have experienced face flushing and increased energy with some agitation for 1 to 2 days following each infusion. I am retired and treatments are covered by Medicare and my supplemental Blue Cross / Blue Shield policy."

• Tat...
• Taken for 2 to 5 years
• January 7, 2025

"I have been taking the medication for 5 years (3 years participated in the study and 2 years on a continuous basis 1/14). I feel good, I can say excellent compared to my condition before taking the medication, blood transfusions for more than 10 years with constant crises and various additional diseases."