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.
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.
