Old Symptoms, New Treatment: My Experience With Starting Ultomiris

When I started my Ultomiris treatments in 2023, I’d kind of reached the end of my hope for remission and had begun to resign myself to being symptomatic forever. I’d had MG for 20 years at this point- I was lucky enough to be diagnosed in 2003, at the age of 14 during my freshman year of high school.

For the longest period of time though, I’d only had ocular symptoms and I was pretty blessed to get into a remission that lasted nearly a decade. All of that changed in January of 2014, though. I went to bed one night feeling a little bit of familiar eyelid heaviness and in the morning I couldn’t open my left eye. I was definitely disappointed, but I attempted to remind myself that things could be worse.

Over the course of 9 years, things certainly did get worse

Unlike in the early years, my ocular symptoms were really hard to treat and I saw minimal improvement with many treatments. I slowly and surely progressed from having only ocular symptoms, to Generalized Myasthenia Gravis.

I failed IVIG by developing aseptic meningitis after my first and only treatment. I’d switched doctors due to moving out of state and couldn’t get them to prescribe plasmapheresis, even though it had previously helped me. I wasn’t a surgical candidate for thymectomy. Cellcept and I didn’t agree, and simply increasing my short acting mestinon didn’t do much but make me twitchy and give me stomach pain.

I was on varying doses of prednisone, we added extended release mestinon, and eventually started Imuran which provided some relief and improvement of symptoms. However, until I moved back to my home state of Iowa and saw my specialist there again, I wouldn’t be any closer to remission.

I was tired and heartbroken by the list of unsuccessful treatments I’d accumulated, and I was beyond exhausted by the persistent symptoms that were its result.

Then came some hope

I was meeting with my Iowa doctor for the first time in about 8 years and much had changed while I lived in Arkansas. I was routinely so fatigued, my ocular symptoms were quite persistent and very difficult to control, I’d gained a lot of weight from nearly a decade of prednisone use. My neurologist had reviewed my chart from the out of state doctor and decided I’d be a good candidate for Ultomiris.

I was optimistic for the first time in a long time. Upon learning that meningitis was a potential side effect of this new potential miracle treatment, that hope deflated a little because I’d been there and done that before, and I wasn’t in a hurry to recreate that experience.

Thankfully, one of the requirements for even starting this immunotherapy was a series of vaccinations against meningitis A and B; additionally, I would need boosters to keep those immunizations up. That was enough to put me in a better position to consider this as a valid treatment option for me.

I decided to go ahead with it

As a nurse myself, I am a big proponent of evidence based practice and medical research, so my doctor explained to me that the studies for this drug had shown that with the vaccines, the risk of developing meningitis related to treatment were quite low. The pros and cons were weighed and I decided I had nothing to lose, but potentially my entire life to regain, so I decided to go ahead with the treatment.

One additional thing that excited me about starting the drug was that I chose to contribute my personal data to its ongoing research study. Like I said, I’m. A big EBP and research nerd. It was now time to put my faith in it from the other side of the treatment chair.