Soliris for Paroxysmal Nocturnal Hemoglobinuria User Reviews
- rwm...
- Taken for 1 to 6 months
- December 31, 2024
"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."
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"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."