Eculizumab User Reviews & Ratings

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

Eculizumab for Paroxysmal Nocturnal Hemoglobinuria "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 for Paroxysmal Nocturnal Hemoglobinuria "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

For Paroxysmal Nocturnal Hemoglobinuria "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."

• Anonymous
• Taken for 2 to 5 years
• May 23, 2024

Eculizumab for Myasthenia Gravis "I have been taking Soliris for about 5 years. It has been great. I have only had to have pheresis and IVIGs a couple of times since I started it. I have the side effects though. I have a new symptom, which is burning feet. I don't know if it's from the drug or not?"

• Nic...
• Taken for 1 to 6 months
• July 10, 2019

Eculizumab for Myasthenia Gravis "I started taking Soliris in January 2019, and by July 2019, I had throat cancer, which was undetectable by CT scan but was confirmed by tissue biopsy."

• Ano...
• Taken for 1 to 2 years
• April 17, 2025

Eculizumab "Was on clinical trial, improved partially on half dose in the blinded part. Resolved completely during the open label full dosing part. No side effects that I knew about."

• Ano...
• Taken for 1 to 6 months
• May 26, 2025

Eculizumab for Myasthenia Gravis "28 yrs after being diagnosed with MG, Soliris is working better than anything I’ve been on. Double vision is mostly cleared up, and overall weakness is greatly improved. Highly recommend."