When meds don't work
I'm 51 years old and have GMG for 5 years. I was on Ultramiris for 4 years and and had no problems at all, lived a normal life. Until the sleeping giant woke about 6 months ago. I've been in the ICU two times in the last month. I've had in the last 6 months numerous rounds of IVIG, 6 plasma exchanges and enough mestanon? To treat half the people who are reading this. By 9 pm at night it looks like I've had a full blown stroke. My fingers are drawn up so that I can't open my hands and my eyes will separate and look in opposite directions. Neck muscles will not support the weight of my head . I've also tried Vyvgart with no results. Currently back on Ultramiris because my World Class Dr. In Jackson says in 35 years of treating MG she has never seen it Quit working!?! Well hello! Blood work and heart is healthy as a 18 year olds. Any one else's meds not having an effect on MG . If I don't find an answer or a Dr that has seen this I am convinced this old boy will never see 52.
Thank you for the encouraging words. My biggest battle is between my ears .I work at a sawmill as a sawfiler and love the work and people that I work with. But I think those days are over. This time last year I was building a cabin in the woods with a generator. Lifting 150 lb beams and putting in hundreds of screws. Wow how life can change. Now a shower and getting dressed is a job.
cypress slab table and countertops, built under the carport. I am doing some better. Gaining strength each day. May have to give up my job though. Thank you for the encouraging words. 
Happy to hear from you. I was just about to reach out. So glad you're doing better. I hope your medicine regimen has settled down, whether its Utramaris or something else. I think until you find a combination that works for you consistently, it's hard to feel secure. It's possible you were just experiencing a series of flares, and your antibodies were overwhelming your meds. I hope it doesn't repeat. Maybe it's time to slow down, get more rest, live with less stress. You are still a young man and I know the temptation is to do everything you always did. But MG is now the boss, like it or not. My mother, who lived to 95, always said the most important thing in life is to know when it's time to move on to the next stage. Good luck. Stay in touch.
I am so sorry. MG is highly episodic. I have seen serious flares and crises in myself and others while on medications that have worked well in the past. I think your case sets a new record and I am very sympathetic.
In my case, the immunosuppressant that has been effective for years just gets overwhelmed by a sudden flood of antibodies, usually the result of an emotional or physical trauma, such as an infection or surgery, I have experienced exactly the same stroke-like symptoms, to the extent of total paralysis. It takes a few months to get everything stabilized again. Don't despair. Any medication that gave you four years of quality life is your friend, not your enemy. The course of your disease can improve as suddenly as it deteriorated. I know nothing about your life, your work, your responsibilities. All I can tell is what I would do. Reduce my life to the simplest possible routine. Avoid stress. Sleep eight hours every night and then take two or three naps, giving my body and my meds all the help I can. I wish you well.I only take azathioprine and 5 mg prednisone daily No mestinon for several years now. I take an over-the-counter sleep aid at bed time and usually sleep well. And I LOVE naps. I think sleep is awfully important for treating MG, so important I'd ask my doctor for help, if a simple OTC sleep med doesn't do the trick. Good luck, Moka. Oh yeah, and take your prednisone with food first thing in the morning. Never later in the day. It will keep you awake.
