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Eculizumab for Paroxysmal Nocturnal Hemoglobinuria User Reviews

Brand names: Soliris, Bkemv, Epysqli

Rating: 8.0

Eculizumab has an average rating of 8.0 out of 10 from a total of 3 reviews for the treatment of paroxysmal nocturnal hemoglobinuria. 67% of reviewers reported a positive experience, while 0% reported a negative experience.

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  • 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."

5 / 10
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4 Report
  • 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."

10 / 10
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0 Report
  • 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."

9 / 10
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0 Report

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Reviews may be edited to correct grammar/spelling or remove inappropriate content. Reviews appearing to come from parties with a vested interest are not published. This information is not intended to endorse any medication and should not replace the expertise and judgment of healthcare professionals.