Craig Whitney
Forum Replies Created
-
Thanks for this post, Scott. After my own flare up and diagnosis in 8/2022, my expectations for improvement in gMG symptoms were unrealistic. As months passed while gobbling down Mestinon, Prednisone, Cellcept, antibiotics, and two sets of Plex treatments, infusions of Ultomiris, and now Vyvgart, my symptoms are largely unchanged. Now, I’m fighting with depression. I would like to find out what experience others have had with anti-depressant treatments — what has worked for them.
-
Stress just kicks my gMG into overdrive, way more than I have experienced before my diagnosis in 8/2022. Hearing how other folks deal with it would be helpful.
-
My gMG and my sweetheart’s health issues have kept both of us pretty much homebound. And we are now in need of a plumber. We are asking those who enter our home to wear a mask, as do we while anyone is here. No one has complained, so far. As was mentioned in a previous post, employers want to keep their workers busy and safe.
-
Four months after my diagnosis with gMG in August of 2022, taking Prednisone, Mestinon, and Mycophenolate was not enough to keep my symptoms at bay. In early December, my neurologist ordered 5 plasmapheresis treatments in hospital, and that helped me feel much, much better. In January of 2023, I began Ultomiris infusions. Two infusions, two weeks apart, but with no difference in symptoms afterwards. Eight weeks later, I was feeling really terrible and desperate for a positive change when I went in for the next infusion. The two-to-three days immediately after that Ultomiris treatment, my symptoms were SO much improved. The following week, right now, that improvement seems to be fading a bit. But I remain feeling better than before the first two infusions. I’m fortunate to have Medicare and a supplemental policy that cover 100% of the Part A and Part B costs, so getting clearance in advance was not a problem. But the cost of the treatments in January (the amount of Ultomiris prescribed is based in part on patient weight, I’m a big guy) was over $500K. If the next infusion in May brings improvement, I will be so grateful.
Hope this info helps somebody else. My old brain doesn’t work as reliably as before gMG and the many and varied side effects of the drugs I am taking. But let me know if you have a question, perhaps I might be of some assistance. Best wishes to all.
-
Hindsight is 20/20 in my case, as seems to be true with other folks who have posted in these forums. Double vision after a couple of days finally forced me to go to the ER, tests showed no stroke, and a (hospitalist) neurologist did the ice bag test. Finally, a diagnosis. Blood tests confirmed it two weeks later. The weeks (months? not sure, now) of debilitating muscle weakness that preceded this, I passed off as just part of getting older – – the diagnosis came shortly after my 75th birthday. It’s obvious, now, that my MG symptoms were actively signaling trouble with my health.
-
Yes. Sometimes it seems like all I can do is sleep. Other days, not so bad. This may be an age-related problem, I am 76. But for the first year after my diagnosis in 8/2022, just getting out of bed before noon seemed impossible on most days. That amount of sleep was a big change in my life with gMG. Neurologist switched my treatments from Ultomiris to Vyvgart recently and that (and Mestinon, Cellsept, Prednisone) seemed to help.