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I continued the Soliris treatment even though it did not help my hemoglobin, LDH or haptoglobin. Because it had been shown to reduce blood clots, my doctor thought it was worth it. 89% of my cells were PNH cells, my LDH was really high and my haptoglobin never registered on the readings (the last two are common in PNH patients). I had to rely on steroids and blood transfusions.
However, I did not have a blood clot, so while it's not a guarantee that Soliris prevents blood clots, it seemed to have helped me.
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Rea, 31; PNH/AA Nov. 2011; Horse ATG Feb. 2012; RI MUD BMT Jan 2013; Overall doing very well!
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