Despite my hopes, here’s my farewell letter to Ultomiris
I partnered with you for several months, but it just didn't work out for me
Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Excited, relieved, and hopeful: These were emotions I felt when I switched my paroxysmal nocturnal hemoglobinuria (PNH) medication a few months ago. I’d taken Soliris (eculizumab) for four years, but I switched to Ultomiris (ravulizumab-cwvz) last July.
I was looking forward to the change.
Getting Soliris infusions every two weeks was time-consuming. Even though each infusion was only 35 minutes, the entire process would take hours. Between getting my daughter to my mom’s house for child care, placing the IV, and waiting on my lab results before starting the infusion, the time added up.
I was relieved to know that with Ultomiris, I wouldn’t be poked with needles as often. By the end of my time with Soliris, my veins were struggling to cooperate when IVs were being placed. Over time, I developed scar tissue blocking those sticks, especially on the first try. I was glad that Ultomiris would allow me to space out my treatments, hopefully reducing my scar tissue so my good veins would be usable again.
I also hoped that I’d feel better, even though I’d felt pretty good on Soliris. I’d seen positive reviews of Ultomiris on online support pages, and I thought the change might help me with my PNH symptoms even more than Soliris did.
Throughout these past few months on Ultomiris, though, I unfortunately started to feel worse. In fact, I felt symptoms I hadn’t experienced in years, similar to how I’d felt before I was treated at all. The positives were that my lab results were phenomenal, all in normal ranges, but I felt the complete opposite, with more frequent and intense fatigue, shortness of breath, and headaches.
After communicating with my doctor, taking time to see if my body would adjust to Ultomiris, and getting tests to make sure my symptoms weren’t caused by something else, we decided to change my medication again.
I knew I wanted to go back on Soliris as opposed to other treatment options for two reasons. The first was that I knew my body responded well to it. I felt good on Soliris and experienced few to no symptoms, and I’d like to feel that way again. The second reason is that I know Soliris is safe for pregnancy if I choose to have another baby.
So just as I wrote my farewell letter to Soliris, here it is: my farewell letter to Ultomiris.
My goodbye letter
Dear Ultomiris,
You know how some people love putting ketchup on their scrambled eggs and swear it tastes amazing, but then some people don’t like ketchup on their eggs at all? I love ketchup, but not on my eggs. That doesn’t take away from others liking it that way; it’s just not for me.
Ultomiris, you’re the ketchup on my eggs in this scenario, and sadly you just aren’t for me. I like you in other ways, just as I like ketchup. I like your treatment schedule and how you make some of my friends with PNH feel. But when it comes to my own reactions, we just don’t mesh.
For years I had no interest in changing from my Soliris medication, so I thank you for at least opening my eyes to the possibilities of other treatments available to me.
I wanted to like you so badly. I thought you and I were going to be best friends, but things didn’t go according to plan. And that’s OK! I thank you for our time together, but I just don’t like ketchup on my eggs.
Keep doing good things for others, though. Maybe you and I can try again someday, but for now, this is goodbye.
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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