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Yes, switching treatments is something many people with PNH navigate, and side effects when starting something new are pretty common. One myPNHteam member shared that when they first began a new treatment, the side effects hit harder at the start — but over time, their body adjusted and the symptoms became less intense.
Sonia Owchariw, in my case, I switched from Eculizumab (Soliris) to Crovalimab (Piasky), participating in the Phase 3 clinical trial before it was marketed, and it continued to cause hemolysis, along with other side effects. Then, I switched to Pegcetacoplan (Aspaveli), and I didn't notice any improvement there either. The hemolysis worsened. Now I'm on Iptacopan (Fabhalta) and I feel a great improvement because it was the medication that best suited my body.
With almost every change, I've experienced some side effects (headaches, weakness, muscle aches, etc.) until my body adjusts. However, when changing medications, the doses are adjusted during the transition period, so you feel better because there's more medication working within you. All of this must be done under close medical supervision, following their guidelines and recommendations.
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