When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I expected the physical challenges. I knew there would be doctor appointments, medications, blood tests, and uncertainty about the future. What I didn’t expect was how much PNH would affect my self-esteem. Before my diagnosis, I was…
Discussion
Treatment with Soliris (eculizumab) appears to help reduce the risk of potentially life-threatening thromboembolic events (TEs), complications caused by clots that disrupt circulation, in people with paroxysmal nocturnal hemoglobinuria (PNH), but it does not eliminate that risk, according to a post-marketing surveillance study from Japan. Researchers found that…
Discussion
One of the toughest questions I’ve faced with paroxysmal nocturnal hemoglobinuria (PNH) isn’t if my treatment is working. It’s whether the symptoms I continue experiencing are left over from the disease or whether I’ve simply become accustomed to not feeling well. When you live with a rare chronic illness…
Discussion
Most adults with paroxysmal nocturnal hemoglobinuria (PNH) who switched from standard C5 inhibitors to Fabhalta (iptacopan) saw their hemoglobin levels rise, remained free from blood transfusions, and reported less fatigue after six months of treatment, according to Phase 3 trial results. The open-label Phase 3b APPULSE-PNH study (NCT05630001) was designed…
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