My farewell letter to Soliris, my PNH treatment for over 4 years
Given recurring problems with my veins, I've decided to look to another option
Note: This column describes the author’s own experiences with Soliris. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
I’ve received biweekly IV infusions of Soliris (eculizumab) to treat my disease, paroxysmal nocturnal hemoglobinuria (PNH), for over four years. Of the two treatment options available at the time of my diagnosis, I had little hesitation about which one I wanted.
My original plan was to remain on this medication until I was done having children, as it was known to be safe during pregnancy. These plans have changed, however. While my health is the best it’s been since my diagnosis and I’m luckily stable with Soliris, my veins aren’t as trusting as they used to be.
I’ve tried preserving them through these years by alternating the arms I’d use for my IVs, but the scar tissue buildup and shrinking veins are finally catching up to me. In the past few treatments, I’ve needed more than one attempt to get an IV in my arm, which has left me feeling defeated. Needle pokes are more painful mentally than physically for someone who’s still recovering from needle phobia.
I opened my mind to possibly getting a port, but after discussing it with my doctor, we agreed I stood a risk of infection and a blood clot with that choice. He suggested instead that I change to another option, Ultomiris (ravulizumab-cwvz), that would require fewer IVs, hoping the added time between treatments would help preserve my veins.
So as I make the decision to change medications, here it is: my farewell letter to Soliris.
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Dear Soliris,
There was a time when I hated you with a passion. I feared you, wanted nothing to do with you, and was devastated that the only way for me to live safely was to depend on you. You were complicated for me to understand and explain to others. I judged you because I couldn’t see past the biweekly IV administration. I’m sorry for how much I took you for granted.
As our chapter together comes to an end, I’d like to offer you my gratitude for what you’ve done for me these past four years. You relieved most of my symptoms, giving me a better quality of life. You’ve brought my hemoglobin and other complete blood counts from dangerous levels into normal ranges. You’ve given me peace of mind that my PNH is under control, eliminating the concern of a blood clot — maybe not completely, as there’s always a risk, but still.
You reminded me to sit every two weeks and take a minute to relax from my busy lifestyle while I received my infusions. You gave me hope that I could live a happy, healthy life, which I’ve been doing. And most importantly, you’ve helped me overcome my phobia of needles. For all of that, I thank you.
And with that, Soliris, I bid you adieu. Can’t say I’ll miss you, but I appreciate all you’ve done for me.
With love,
Erin
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.
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