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I was 58 when diagnosed with Achr+ MG. I began with double and blurred vision, difficulty speaking for more than a few moments at a time, chewing fatigue, swallowing issues, that progressed to sided weakness, and fatigue. It progressed quite quickly from first symptoms to my first “crash” about 6 weeks later. I do not believe anyone (except the Opthalmology Resident – yep, that’s right) took the initial diagnosis too seriously and believed we had time to react. After the first crash, I was placed on high dose steroids, twice weekly PLEX, felt better and started on Cellcept. I crashed a second time 6 months later. During the second admission (and second round of being placed on vent), a CT scan indicated that I had an enlarged thymus gland. After discharge, an MRI with contrast indicated an enlarged thymus gland. It took a few more months of back and forth and ongoing gMG symptoms, but a laparoscopic thymectomy was planned. I find no fault with my surgeon in whom I had great trust, but the thymectomy was awful. My lung was nicked and ended up collapsing, and the thymus gland was huge and the procedure turned into an open chest procedure and although found not to have a thymoma, it had began to spread out and attach to lymph glands in my left armpit and parathyroid glands. In short, a long extensive surgery. I had to recover from the surgery and collapsed lung. I also went through a year of AFib before it finally went away.
If it all sounds awful, it was! The good news we were able to begin tapering down on steroids, and PLEX treatments slowly went from twice weekly to once per week. We continued through trialing every ‘tool in the box’ with the most ironic moment being a paradoxical response to retuximab when I had two crashes.
So, although it sounds like I might think otherwise, I would definitely recommend a thymectomy after age 50 if your case progresses to unstable gMG. For me just to be able to reduce the steroids was a win.
The good news is Soliris came on the market and now I am stable with biweekly PLEX and Soliris infusion treatments, 12mg Prednisolone daily, and a mix of long acting and standard Mestinon to address basic symptoms.