My Experience With Enspryng Has Been Mostly Positive

What do you do when you’ve run out of choices? That’s where I found myself in May 2020. After living attack-free for 10 years, I was stunned when I found myself dealing with a surprise neuromyelitis optica (NMO) attack. It wasn’t until the end of that summer that I was offered Enspryng (satralizumab-mwge), which I believe is now saving my life.

To refresh your memory, May 2020 was two months after much of the world shut down due to the COVID-19 pandemic. As I lay in my hospital bed, I could hear doctors and nurses crying in the hallway. The doors to the pandemic ward were just outside my room. There was a fear of infection, so my neurology assessments were conducted via phone or video conferencing, even as an admitted patient.

While I could still see and walk, the pain in my head was unbearable. I was on a waitlist for an MRI, but with the hospital staff shortage, it was unlikely I’d get one. Neurologists assessed that I was about to have an optic neuritis attack and the swelling was affecting my brain, putting pressure on my cranial skull. Intravenous Solu-Medrol (methylprednisolone) made no impact.

The pain only went away when a fellow from neurology suggested using four large needles to inject steroids directly into my temple and skull. The procedure caused the most pain I’ve ever endured in my life, but I’d do it again to stop the agony of the swelling.

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There’s More Hope for Treatment Now Than When I Was Diagnosed

The NMO attack came as a surprise because for 10 years I had been using CellCept (mycophenolate mofetil) without any challenges. CellCept was the only viable treatment plan for me. Other medications like Imuran (azathioprine) didn’t work for me because I suffered from allergic reactions and side effects that were impossible to manage. Rituxan (rituximab) isn’t covered by public or private insurance in my province of Ontario, Canada, for NMO patients over the age of 18.

Neurologists knew that my time with CellCept had run its course, and they were unsure about what to do next. Thankfully, Canada’s federal government approved two new treatments that summer: Soliris (eculizumab) and Enspryng.

The onboarding process

I’m grateful that my neurologist stays current on all NMO treatments. That’s how he became aware that the pharmaceutical company Roche was offering free treatment with Enspryng to a certain number of patients in each province for the entire time I’d need the medication. Soliris wasn’t an option because I’ve had adverse reactions to medications with similar properties. So by September 2020, I slowly began replacing CellCept with Enspryng as my primary treatment for NMO.

I was prescribed three starter doses in my first month, then a monthly injection moving forward. Thanks to Roche’s Compass Patient Solutions program, I was able to call or email seasoned nurse practitioners with any questions or concerns. They also assisted me with the necessary paperwork and continue to act as a conduit between my neurology team and me.

I was assigned a lovely nurse who offered to visit my home, even during the height of the pandemic, or do a video conference to teach me how to inject Enspryng into either my stomach or thigh. My husband was also welcomed to join in case I ever needed him to do the monthly injections.

Life with Enspryng

For the first several months, I experienced fatigue, nausea, and vomiting after every injection, but these side effects eventually went away. Now, it’s just a mental battle to inject a needle into my abdomen every month. There’s still some exhaustion, and the site is always sore and sometimes bruised, but these are small challenges I can overcome. I think of my daughter and how important it is to be here for her, and suddenly I can jab the needle into my body.

Enspryng isn’t for every NMO patient, but I’m more than two years in and feel grateful the drug is working for me.

Note: Neuromyelitis 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).