The emotional road to my first PNH treatment

Beginning biweekly Soliris infusions was a lot for this writer to process

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by Erin Fortin |

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When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, I was overwhelmed by all the information that was thrown at me. I had to process multiple questions: What exactly is PNH? How do I explain it to others? What does this mean for my life? And most importantly, which treatment should I choose?

At the time, I had only two treatment options: Soliris (eculizumab), which had been available for years, and Ultomiris (ravulizumab-cwvz), which had been approved for PNH patients about two months earlier. The dosing frequency was important for me to consider, as Soliris would be administered every two weeks, while Ultomiris would be administered every eight weeks. My doctors pushed for me to start Ultomiris because I had a fear of needles, and going less frequently would be more ideal.

I had another important concern when weighing my options: Which medication would be safe to take during pregnancy? I was planning my wedding and starting a future with my husband, and we had talked about having children. I knew I’d be on PNH medication for a long time, and we’d hoped to start a family in the coming years.

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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.

I shouldn’t let my PNH diagnosis define me — or should I?

I asked my PNH specialist about this concern. There wasn’t much information available about taking Ultomiris while pregnant, since it was still so new at the time, but after doing a quick search, my specialist found some success stories about pregnancies in patients on Soliris. Once I heard that, my decision was made. I wanted to go on Soliris.

Staff at my doctor’s office started the authorization paperwork for treatment, and then it was a waiting game.

This appointment occurred just two days after I was diagnosed with PNH. To say I was overwhelmed is an understatement.

Accepting the ball and chain of regular infusions

In the following days, I really struggled with the mental weight I was carrying. I knew that once I started the infusions, I’d be doing them forever. My life was going to change, and I could never go back to life without treatment again. That was so heavy and difficult to process. Each day, I waited for the phone call from my insurance company and wondered when the process would start.

About a month later, that phone call came and the appointment was scheduled. I packed a bag with my iPad, a blanket, and a water bottle. My mom reached out to other PNH patients on social media for advice about what to expect from the first treatment, so I was prepared not to feel well for the next few days. I barely slept the night before and lost my appetite the morning of the appointment.

During my first Soliris treatment, I felt so weak from fear that I took a deep breath, tried to release the tension in my shoulders, and accepted that this was something I had to do. My nurse was so gentle and kind, talking with me at every step, checking in on me, and making me feel comfortable. Over the years, she’s become one of my favorite people in the world. I’m so grateful for her kindness during all of my treatments, but especially that first one.

When I reflect on how I initially viewed biweekly PNH treatment, I felt burdened by the commitment. Fourteen days — that’s all I had in between infusions. I was scared it wouldn’t be enough time to live my life and accomplish all my hopes and dreams, but here I am, years later. Treatments have become such a part of my lifestyle and routine that the 14-day ball and chain doesn’t bother me anymore.

I’ve learned that I don’t have to live on a 14-day cycle. Yes, it’s an appointment scheduled on my calendar, but my life doesn’t have to revolve around that two-hour block of time. I have many other commitments that take up much more of my time, so why should I mind this one? My treatments come and go, and life goes on just as happily as before.

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.