[Deborah A Dortzbach]

Thanks for all sharing these insightful experiences. I can identify with many of them. Until I got more control through mycophenolate (cellcept) I had some critical incidents driving that left me scared, especially while on the freeway at night. It was enough to keep me away from driving at night under those conditions–the glare, the multiple lights enhance all the problems. I also struggle with dry eye, use multiple drops and see a neuro opthalmologist and now put my own serum tears into my eyes which bring some relief for the dry eye. It is costly though. It is very important to keep on top of the day to day changes and even different times of the day which MG brings and how it affects driving and to avoid driving when unsafe.  Sun glasses are extremely important as well.  I have pulled over and asked someone else to drive when I felt unsafe, or limited night driving or freeway driving, etc.

[Deborah A Dortzbach]

Just chiming in on the steroid question and choice of doctor. With MG it is important in my opinion to remain with as knowledgeable a physician with MG as your insurance and physical location allows. The field has significant scientific advancement but it is specialized and takes such individualized management making physician practices difficult to gain experience. In my case, I was on high levels of steroids for management, like others initially but the goal was always to reduce if possible and today after very careful management and a long process (more than a year) I am nearly completely weaned and fully on mycophenolate (cellcept). I feel great and function almost normally barring the common fatigue. I tell my doctor frequently “I am in a good place.”  Now, to lose those prednisone pounds!

[Deborah A Dortzbach]

Just chiming in on the steroid question and choice of doctor. With MG it is important in my opinion to remain with as knowledgeable a physician with MG as your insurance and physical location allows. The field has significant scientific advancement but it is specialized and takes such individualized management making physician practices difficult to gain experience. In my case, I was on high levels of steroids for management, like others initially but the goal was always to reduce if possible and today after very careful management and a long process (more than a year) I am nearly completely weaned and fully on mycophenolate (cellcept). I feel great and function almost normally barring the common fatigue. I tell my doctor frequently “I am in a good place.”  Now, to lose those prednisone pounds!

[Deborah A Dortzbach]

Exercise is essential and now becoming routine for me, but responses are still sometimes unpredictable and that can be challenging. Learning to plan for and interpret unpredictability is part of the “adventure” and acceptance of this challenging condition–but that is exactly what makes MG–well, never boring! I also have a systemic rheumatic disease–ankylosing spondylitis, so it is particularly important to keep moving. I have found swimming  the width of a pool that is heated to be really my sweet spot. It might sound strange to enjoy warm water–but it helps the joints. Enjoying swimming the width makes swimming not too challenging, and I just keep doing it at a pace that makes sense for that day.  When I just really don’t want to go exercise, I force myself to consider it “like medicine” because, actually, afterward, I really do feel much, much better–although often more tired. But then, who says an afternoon nap after a reasonable swim isn’t a good thing with MG?

[Deborah A Dortzbach]

I am blessed to have received Evusheld Antibodies — twice, in fact because the first doses  were deemed inadequate, and I just went for “catch up” doses. I had no real reaction, except headache the second time. I am extremely grateful for this layer of prophylaxis protection.  In addition to MG, I have ankylosing spondylitis (AS), an additional autoimmune disease and am taking cellcept for MS and a biologic injection, Cimzia for the AS.

Debbie

[Deborah A Dortzbach]

So good to read all these! I am also seronegative. This is my 3rd year anniversary and I am 72, so you can see I was a “late comer”. Double vision was the prompt that took me to the ER, single fiber EMG the eventual confirmation. Like many of you the past three years have been a journey—mestinon, a constant companion, IVIG an early necessity for a near crisis, and prednisone for more than a year to stabilize. Now I take cellcept and have definitely plateaued to a stable place after a full year and am taking just a baby dose of prednisone. I swim in a warm pool regularly because I also have another autoimmune disease which definitely complicates—ankylosying spondylitis affecting my back and joints. But, I am grateful—with lots and lots of medications to navigate and wonderful new friends with similar disease to guide, life is not only manageable but beautiful. I do have excellent medical care. My own spiritual walk in reading God’s Word is a constant source of strength. Yes, I would love to meet via zoom or however!

Debbie

[Deborah A Dortzbach]

Warm greetings fellow seniors! As a 72 year old diagnosed with myasthenia only 3 years ago and now learning to cope with generalized MG, I am blessed to learn with you all. I am witness and partaking of all you speak of—unannounced (and most unwelcome) fatigue, trials with different medications, sleepless nights, interrupted careers and retirement plans. BUT, I am also discovering strengths and resilience in areas I never knew I could develop, the joys of slowing down in life to enjoy moments again and grasp things I would really like to do and people and others I really want to invest in. You know, I am grateful that for the most part pain is not a daily part of life, and when something doesn’t work, there often are options for something else. Even uncertainties can bring an element of surprise and perhaps adventure, if one spins that perspective once and awhile. I take lots and lots of medicine, (cellcept now) after more than a year of prednisone and months of IVIG, but now,  maybe for awhile, I can press on with new discoveries. Praying you all can, too.
Debbie

[Deborah A Dortzbach]

Definitely. Prednisone is the known culprit. After two years of prednisone, I have tapered to a “baby dose” and am trying to lose the associated weight gain which is a struggle, along with the depreciated self-image. But, I am thankful for improved strength and independence. The trade offs are worth it. That is what we have to keep focused on!

[Deborah A Dortzbach]

I can relate to many of your concerns–with driving, eye fatigue, feeling droopy eye, sun sensitivity. Here are some of my tricks and lessons and go-tos. Always keep eyes moist–my opthamologist recommends RefreshPlus eye drops and I always have them in my pocket for use multiple times a day. Take multiple breaks from computer, phone, TV, reading, etc. I have even pulled off the highway at night for breaks, just for my eyes. Even 10 minutes helps. I have to actually close my eyes and rest them for a full 10 minutes, not just “take a break and do something else. I asked my neurologist just two days ago about the effectiveness of pridostigmine when used just “as needed” for symptoms. “Yes”, she said. It can be used that way and be very effective. So, I do–when I feel “droopy eye” coming on, I just can use that drug and feel much better. I recommend asking your neurologist the same. Just by way of information, I am on 2000 mg of CellCept daily and now a maintenance dose of prednisone of 2 mg daily. It seems to be “holding me” and I swim in a warm pool regularly which helps my overall physical and mental state tremendously.

[Deborah A Dortzbach]

I joined a family book club. We are all women, limit books to good novels, pass the recommendations and facilitation around and give ourselves plenty of lead time and meet by zoom. It has become low pressure (because you don’t have to finish to book to join in) and really enjoyable and yes, helping with stress–especially when I can’t sleep at night. My tendency in the past had been to scan the internet on my phone during sleepless moments. Not recommended! The “blue light” is not helpful for getting to sleep. But sleeplessness and even anxiety and stress can be helped with some minutes of reading.  Now, if I can’t sleep after awhile, I get up, get cozy with a warm blanket and my good book for a bit and when heavy-eyed again crawl back to bed. It’s working much better.

 

[Deborah A Dortzbach]

Michelle, I love your activity–and I also find that cooking helps me–just the kitchen aromas and promise of yummy delights coming from something I made as well as the enjoyment of sharing goodies with others and getting the focus off myself. Other activities that nurture strength and harness anxiety include uplifting music. I am trying to build more of that into my day–either practicing the instrument I play or just listening more intentionally. My faith helps me very much and I pray and read my Bible regularly as an anchor to my day. Don’t get me wrong. There are plenty of stress-filled days, when the unpredictability of myasthenia is a particular stress-trigger, but I know I have a quiver of possible activities I can pull out to help.

[Deborah A Dortzbach]

I sometimes don’t know what is a “flare”, which I interpret as a more prolonged period of MG symptoms or what is the unpredictability of an “MG day”.  So, in many ways, I am still learning about how to respond to physical, mental, and emotional triggers.  But I will say I often notice a predictable “lag” 1/2 way through the day for me. I seem to “hit a wall” around noon or 1 or 2 PM and it is helped by just resting for even 30-60 minutes or so.  I also can have very unexpected “dips” throughout the day of extreme fatigue, sometimes making planning difficult (like long distance driving by myself). These are things that are changing in my life that take more calculation to understand and mental capacity to plan for and be safe. But they are doable and it is so helpful to understand them more and even take medication (mestinon) to accommodate symptoms.

[Deborah A Dortzbach]

This continues to be an ongoing challenge. Today I received my 3rd dose of Pfizer vaccine (at the recommendation of my neurologist). I am very grateful for this “boost” and at the same time aware it is not complete protection since I also take cellcept, prednisone, and a biologic for another systemic arthritis in addition to MG. But I am determined to be vigilant, do all that I can, and encourage others to also protect themselves and others (get vaccinated) and be aware of my environment (what are the vaccination rates, the infection rates and trends in my city) and even take risks.  For a time I returned to swimming in a warm indoor pool (it was heavenly and greatly helped my arthritis and sense of well-being.). The environment was controlled–not too many people.  But now I have stopped, because the Delta variant rates are driving up the rates in my city and the pool is indoors increasing the risk.  I think we need to advocate that more places require vaccinated-only admissions, allowing people like ourselves to participate without high risk of infection.  It is very important that we do get out in public–safely. It really helps our sense of belonging and perspective, community, and well-being. I try to think about the fact that risk is cumulative and consider the amount of time, numbers of exposures (people), distance, time of day I visit a store, COVID rates and trends in my area as well as behaviors (people wearing masks?). I now double mask when going out because of the Delta variant. I also visit parks, arrange for picnics with friends, take short walks with friends (often they have to stop and rest with me!).