How Complement Inhibitors Helped Stabilize My Condition and Change My Life

The game of trial and error with trying new treatments for MG is a game many of us know too well. I was diagnosed with myasthenia gravis over a decade ago, though my symptoms appeared long before that. There were few treatment options available and nothing FDA-approved for MG aside from mestinon.

Since then, we’re living in a renaissance of MG treatment options, and patients diagnosed today have many options to choose from, many of them made specifically for our rare disease. I have a severe, refractory form of MG.

There were years when I was unable to walk at all, living in bed, and living in the hospital part time, constantly in an MG crisis. I was not on any aggressive treatment then. I was being told by doctors I was "imagining" my symptoms, and also the options were so limited. In the last six years, I started seeing a new neuromuscular specialist and have been put on more aggressive treatment. I have made it years now without an MG crisis hospitalization, which is a huge victory.

Trying a new complement inhibitor

In 2020, during the height of the pandemic, my specialist recommended trying a brand new complement inhibitor (Solaris) approved for MG patients that showed promising, fast results. My disease was so unstable that I was ready to try anything. I had a lot of anxiety about the requirements for this new medication: a strict vaccine schedule because of the meningitis black box warning, a four week loading dose period, and uncertainty if my disease would even respond.

I did the first round of vaccines in my doctor’s office at a research hospital and then the following ones at a local pharmacy. I actually ended up in one of the worst MG crises I’ve ever had in July 2020 while I was in the middle of the loading doses.

It was scary

Being hospitalized for MG during the pandemic was as terrifying as it sounds. Yet within about eight weeks, I went to stand up one day and could walk to my bathroom. My diaphragm is always extremely weak, but I could move without gasping for breath. I could hold my head up. I saw my neuromuscular doctor not long after and told her the good news.

Soliris helped stabilize my condition enough that I was finally able to have thymectomy surgery at the end of 2021. That also helped stabilize my condition after a number of years.

Making a switch

When the 8 week version of Soliris, Ultomiris, came out, I switched to that. I was on IVIG every other week the two years I was on Soliris, which meant I had infusions every single week, about 8-10 infusion days a month. It was an intense schedule. I felt like I never had a break from infusions, so it was a welcome relief to switch to a longer-acting version. I’ve been on Ultomiris now for four years. Admittedly, I’ve had more difficulty tolerating Ultomiris than I did with Soliris, but it has worked to keep my disease more stable as well.

Unfortunately, at the end of 2024, I got an infection that immediately turned into sepsis. I am also on a high dose of immunosuppressants; it is a perpetual risk. It has been a long road of recovery since then. I am still dealing with long-term complications and have not recovered fully.

Another adjustment

Last year, my ADLS (activities of daily living score) were double what they usually are. I had to reduce multiple treatments during and after sepsis. My condition became much less stable again. I had heard that other patients had switched from an 8 week schedule to 6 week Ultomiris schedule, and I thought that would help me too.

It took some work and delays with my insurance, but they eventually approved me switching to an every 6 week schedule (this is an atypical dosage of Ultomiris). But that more frequent dosing has helped my ADLS. I am doing better than I was a year ago. I continue to stay on the vaccine schedule required to be on Ultomiris. I am due for my 8th meningitis vaccine this year. The drug manufacturer requires patients to carry a card with information about the black box warning. It is always in my wallet. It has all become normal life for me now. I am grateful Ultomiris continues to work for me.

I feel very lucky that despite having a refractory form of MG that my disease has responded to complement inhibitors. Not every MG patient will. I feel lucky to live in an era when so many treatment options have become available. It was a harrowing experience the years I was living part time in the hospital, waiting for a doctor to take me seriously, and for treatment to work. I would say to other patients out there to have faith, keep trying, keep looking up.