I’m finding my rhythm again thanks to a positive turn in my PNH journey

Note: This column describes the author’s experiences with Fabhalta (iptacopan). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

There’s something powerful about being able to say, “This is getting better.” After the uncertainty that came with my recent medication change for paroxysmal nocturnal hemoglobinuria (PNH), I can finally share an update rooted in positivity, progress, and a renewed sense of balance.

Transitioning from self-infusing Empaveli (pegcetacoplan) to a pill form of Fabhalta (iptacopan) felt like stepping into unfamiliar territory. Even with hope in my heart, I didn’t quite know what to expect.

But now, settling into this new routine, I’m beginning to find my rhythm again — and it feels good.

Recommended Reading

April 27, 2026 News by Michela Luciano, PhD

Iron in kidneys leads doctors to diagnose man’s PNH: Case report

A good change

The biggest and most noticeable change has been the simplicity of it all. My days are no longer planned around infusion schedules or the time it takes to prepare and recover from them. There’s a freedom in that that I didn’t fully appreciate until now. Something as small as taking a pill has created space in my life for more ease, more flexibility, and, honestly, more peace of mind.

Of course, no transition is completely without its challenges. I did experience some side effects such as headaches early on, which slowed me down a bit. At times, I had to pause and give my body the rest it needed.

But even in that, there was reassurance. The headaches have been manageable — and more importantly, they’ve been easing up over time. Each day feels a little better than the last, and that steady improvement has been encouraging.

What stands out most to me is how my body is responding overall. There’s a growing sense that this change was the right move. While I’m feeling fewer symptoms, my energy is stabilizing, and I’m starting to feel more like myself again. Not just physically, but mentally, too. There’s a lightness that comes with knowing I’m adapting well.

This experience has reminded me of something important. Sometimes the changes we’re unsure about end up bringing the growth we need. It’s easy to focus on what could go wrong, but there’s also so much that can go right— and I’m choosing to lean into that.

I’m also learning to celebrate the small wins. Waking up with a little more energy. Getting through the day without interruption. Noticing that the headaches aren’t as frequent or intense. These moments matter. They’re signs of progress, even when they seem minor on the surface.

Living with PNH will always come with ups and downs, but right now, I’m in a season of forward movement. A season where things are improving, where I feel supported by my treatment, and where hope continues to lead the way.

And that, in itself, is something worth holding on to.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.