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.
We have so much in common. I now live in the cabin in the woods that I built years ago when I was able. But, hey, I just built a 4x12 covered woodshed, so I'm still going, at 76. I just have to work in one or two-hour spurts. Jobs that used to take a couple days now take a couple weeks. But I enjoy the work and will do it as long as I can. So should you. Experienced sawfilers don't grow on trees. They are valuable. Do everything you can sitting down, to save energy. Take breaks. Make sure everyone at work knows about your MG and what it means. Don't hide it. You'll be surprised by how helpful and accommodating they will be. When you can't do it anymore, even part time, then face up to it. What you need to tell yourself, over and over, is "it is not my fault and there is nothing I can do about it."
Between your ears is a lot of anger. Dump it. Anger at your doctor, your meds, your MG and especially at yourself accomplishes nothing and poisons the good but more limited life that is still possible for you.
I look at it like this. My MG is not an invader to be battled. It is my own body setting limitations for me. In high school I wanted to be a great athlete. It took a while to recognize my innate mediocrity. Our bodies have always limited our expectations, and we have learned to live with those limitations. MG imposes new, severe limits. Don't try to live in denial. Accept those limits and adjust to them. I am never going to get 'well.' Never. But I can truly say that I have never been happier, though taking a shower is indeed a chore. My doctors and my meds are all on my side. Don't be mad. Let your old dreams fade away. Make new dreams that are still within your abilities. Your happiness has really very little to do with your muscles. MG is just another challenge like many others you have faced. I know you'll emerge from this crisis and find a place for yourself that is happy and rewarding.
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.
