After years of flare-ups, I achieved myasthenia gravis remission

Mike Stabile holds his grandson, Alex Stabile, while in between myasthenia gravis flare-ups. (Courtesy of Mike Stabile)

This is Mike Stabile’s story:

There are no physical signs that I have myasthenia gravis (MG). My last flare-up ended in July, 11 months ago.

Previous flare-ups would last two to three months, followed by a period of minimal symptom expression (MSE) lasting a couple of months. Each year, I would cycle through several of these periods. During that time, I thought that MSE was the same as remission, but now I realize that my MG symptoms were still there, just below the radar.

When my last flare-up started a year ago, my neurologist decided that prednisone wouldn’t be sufficient going forward, so she put me on another therapy until December. Unfortunately, blood tests assessing my liver and pancreas function indicated that I needed to switch medications, so now I’m on Cellcept (mycophenolate mofetil) in addition to prednisone.

During each flare-up, I would increase my prednisone dose to 40 mg and then start to wean down when an MSE period began. The lowest I ever got was 20 mg before the next flare-up began.

But since my last flare-up ended in July, I’ve been in full remission!

Triggering flare-up symptoms

How do I know I’m in remission? During previous MSE periods, I could induce slight MG symptoms by drinking a beer. Apparently, even a low amount of alcohol was enough to trigger minor symptoms, which then subsided the next day. I would do everything I could to avoid the triggers that had contributed to my previous flare-ups, but eventually, the next one would start, no matter what I did.

But since July, alcohol or any other activities that used to trigger flare-ups are now no problem for me. If people met me now, they wouldn’t believe that I have MG unless I showed them my acetylcholine receptor antibody test results.

I’m down to 10 mg of prednisone, and I feel great. The only symptoms or side effects I’m currently experiencing are from the prednisone and Cellcept.

Each time I entered an MSE period, I couldn’t help but wonder if I’d just had my final flare-up, and I would start to hope. But, until last July, another one would always begin, and I’d return to feeling depressed and anxious. Being in real remission has not eliminated my anxiety, but it has stopped me from feeling depressed.

Wouldn’t it be wonderful if I could wean off all medications and still be in remission? That’s the final goal for many MGers: Stop the symptoms and then stop the meds. Unfortunately for most, this is more of a fantasy.

In recognition of Myasthenia Gravis Awareness Month in June, the Myasthenia Gravis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by myasthenia gravis, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MGSpotlight, or read the full series here.