Starting Soliris infusions for the second time on my PNH journey

Switching medications prompts reflection on how far I've come

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by Erin Fortin |

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A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

Note: This column describes the author’s own experiences with Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Time seemed to slow down as I entered my infusion center last week. I’ve gotten into the habit of driving there, walking through the parking lot, and checking in at the front desk. But I hadn’t realized that, somewhere along the way, this process had become a part of my journey with paroxysmal nocturnal hemoglobinuria (PNH). Last week, it felt like someone was shaking me awake to show me how far I’ve come.

It was a special day because I was restarting my old medication, Soliris (eculizumab). I had received infusions every other week for about four years before switching to Ultomiris (ravulizumab-cwvz) last July. My veins were struggling to cooperate during IV placements, and because Ultomiris is administered every eight weeks, I hoped this new schedule would give my veins a chance to heal.

I continued the treatment for about six months, but unfortunately, I started feeling worse. After consulting my doctor earlier this year, I decided to go back on Soliris.

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Then and now

It was surreal to compare last week’s loading dose of Soliris with my original loading dose from almost five years ago. I’m in such a different stage of life, both mentally and physically. I was 24 years old then — young, naive, and uneducated about my disease. Now, I’m 29 and a mother. I’m more experienced with medical setbacks and confident in handling my care.

During my treatment last week, all I could picture was a movie scene with a side-by-side view of me at 24 and me now, going through the same motions. I could see the sadness and fear in my younger self’s eyes, as she was unsure about what to expect. Meanwhile, the current me was counting down the seconds until the medicine hit the veins because she knew she would feel better.

In a previous column, I talked about the emotional road to my first PNH treatment, including why I chose Soliris and how I feared its strict infusion schedule. But here I am, in the same position years later, and my emotions have completely changed. I’m grateful to be shaken awake and forced to appreciate my growth. I no longer fear treatment because I’ve come to value how it improves my quality of life.

I now feel excited, hopeful, and relieved. I’m excited to have my energy back, hopeful that this is the right decision for me, and relieved to start feeling better. The only negative emotion I feel is the reason why I switched medications in the first place: I worry if my veins can hold up.

Being poked multiple times for a successful IV placement is painful and upsetting. There’s the buildup of anxiety, followed by disappointment when a stick is unsuccessful, and then the dread of having to go through it again.

But after many days of PNH symptoms over the last few months, I am like a warrior consciously choosing to enter the battlefield again. I’ve decided I am willing to endure as many pokes as it takes to get my medicine and feel better. As someone who once had a terrible phobia of needles, that is a powerful step for me.

So please raise a glass with me to toast the (second) commencement of my biweekly treatments. This time will be better, I know it. Cheers!

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.