Despite the side effects, Soliris has given me another chance at life

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

I’ve endured five years of needles, regular blood work, IVs, bone pain, brain fog, loss of hair, eyebrows, and eyelashes, deteriorating cartilage in my joints, fatigue, and exhaustion. But these five years have also been another chance at life.

This week marks the five-year anniversary of when I started the medication that keeps me alive. I nearly died in September 2020 from a rare disease called atypical hemolytic uremic syndrome (aHUS), which was triggered by an asymptomatic bout of COVID-19. I was in the intensive care unit for nearly two months, suffering from multiorgan failure, red blood cell destruction (hemolytic anemia), and platelet destruction (immune thrombocytopenia).

Having a diagnosis meant I could start treatment. But there were a few complications. My kidney damage was severe and seemed like it might be permanent. I also fell during all of this and punctured my liver, resulting in a large hematoma in the left side of my abdomen.

At the time, there were two treatment options for aHUS. My weakened state was a big factor in deciding which one I’d take.

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5 years on Soliris

My team chose to start me on Soliris (eculizumab), a monoclonal antibody therapy that basically helps keep my immune system from attacking me. It’s administered via an IV or port every every seven days for the first month or two, and then every 14 days after that. The other aHUS treatment, Ultomiris (ravulizumab-cwvz), is administered every eight weeks. We hoped the more frequent schedule of Soliris would help my body heal.

However, I wasn’t aware that this type of treatment can cause side effects similar to those of chemotherapy. My infusions are typically administered in a chemotherapy facility, where they’re monitored by an oncologist or hematologist, and I’m assigned a chemo nurse.

Soliris can affect each patient differently. But in talking with others in Facebook support groups, I’ve noticed that many of us experience a lot of the same side effects. Some people are lucky and have no side effects at all, while others deal with constant complications.

In my case, for two or three days after an infusion, I usually experience migraine, runny nose, sore throat, raised blood pressure, nausea, hives, sleep disturbances, extreme fatigue, fever, symptoms of postural orthostatic tachycardia syndrome (POTS), and bone pain. But I constantly deal with bone pain, muscle pain, POTS, muscle weakness in the arm where I received the infusion, hair loss, and blurred vision.

Soliris is extremely hard on my body, but I’ll likely need it for the rest of my life to keep my aHUS under control. Even though the treatment causes me many side effects, it has allowed my body to heal. And despite my severe kidney damage and bleak prognosis, I was able to stop dialysis after only five months, thanks to Soliris. Dialysis was by far the worst part of my rare disease journey.

Given the extent of my kidney damage in 2020, my life expectancy was only one to five years. So the fact that I’m still here five years later is a huge milestone. The side effects I deal with are better than the alternative. Soliris saved me from a lifetime of dialysis, and it continues to save my life every day.

Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.