• Josh

What's in the name?

From my diagnosis in 2014 to February 2019 I received the only approved medication for PNH at that time, Soliris which was an administered IV infusion every fourteen days. Living in a fourteen day cycle between treatments was my life. Personally, I found the fourteen day cycle of Soliris to be mentally exhausting after a few years of having to be at the cancer center every other Wednesday, but it was necessary to continue living safely with PNH. In late 2018 the FDA approved a second treatment for PNH, Ultomiris. Link. Ultomiris is an every eight week infusion vs the every two weeks with Soliris and after reviewing the clinical trail data with our physician switching to Ultomiris was the best fit for our family. I can honestly say it was the hardest decision we have made regarding PNH. How scary is that? To switch from a sure thing, Soliris, which worked incredibly well for me to treat my PNH, to newly FDA approved Ultomiris. I started my Ultomiris infusions February 2019. I was able to wake up and live a day fifteen without treatment for the first time in five years. Just to break that cycle empowered me as a patient to start finding strength in conquering my day fifteen.





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