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Hi Amy… I started with IVIg until my insurance denied it. While fighting for 3 mos. When I restarted IVIg it didn’t work. I was switched to Soliris. Before the 35 minute infusion was completed my vision improved clearing my blurred/double vision. I was on Soliris for 16 infusions, when covid19 hit my Dr didn’t want me near any healthcare facility. My vision isn’t cleared but I can live with random, occasional blurred vision for 10-25 seconds. I can close 1 eye and clear my vision.
I did not get any assistance financially other than my insurance. The billing was $70,000-80,000. Insurance got an immediate 50% discount but was over $500,000 for 16 doses. Thankfully my insurance covered it. I had no side effects, no infusion issues. Also the last infusion didn’t wear off for 3.5 months then my vision changed. I’ve been told Alexion has a similar infusion that is supposed to be comparable at 1/10th the cost. I believe it’s Altomira. I would try it if it gets on my ins. Formulary. Best wishes, I hope this helps.