AAN 2024: Many Vyvgart-treated patients have few, if any, symptoms
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Margarida Maia, PhD
2d ago
Many of the adults with generalized myasthenia gravis (gMG) who took part in ADAPT, a Phase 3 clinical study of Vyvgart (efgartigimod), and its open-label extension, ADAPT+, experienced minimal or no symptoms and a quality of life closer to that of healthy adults. While Vyvgart is approved to be given once weekly over cycles of four weeks, every-other-week continuous dosing appears to work just as well, broadening options for more personalized treatment, according to data from an ongoing Phase 3 clinical trial called ADAPT NXT. These findings were presented in two separate posters at the rece ..read more
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Changing the darkness of medical trauma into gold
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Mark Harrington
6d ago
Note: This column includes thoughts about suicide. Resources for help are listed at the end of the column. This week I did a self-inventory, as I’d become concerned about a few things. I noticed there are times when I sit in a chair, stare out the window, and do nothing. Sometimes I’ll pick up a book and, 30 minutes later, notice I haven’t read a page. There are times when I sit down with my to-do list and, hours later, get up from my desk without a single item completed. Performing this inventory gave me insight into the state of my emotional health. On the surface it may seem that I’ve beco ..read more
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AAN 2024: Benefits of Ultomiris sustained for more than 3 years
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Margarida Maia, PhD
1w ago
Ultomiris (ravulizumab) continues to be well tolerated and to keep symptoms of generalized myasthenia gravis (gMG) under control when used for more than three years, according to a final analysis of data from an open-label extension of the Phase 3 CHAMPION-MG trial. The data were presented by Tuan Vu, MD, a professor at the University of South Florida in Tampa, at the American Academy of Neurology (AAN) 2024 Annual Meeting, held April 13-18, in Denver, Colorado, and online. The presentation was titled “Long-term Efficacy and Safety of Ravulizumab, a Long-acting Terminal Complement Inhibitor ..read more
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Having MG significantly hinders patients’ ability to work, study finds
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Andrea Lobo
1w ago
People with myasthenia gravis (MG) — particularly those with more severe symptoms — are significantly hindered both in their ability to work and to engage in activities of daily living, a survey study reported. The impact of these impairments ranged from 13% to 40% across work time missed, as well as reductions in work productivity. Further, patients experienced an overall impact in work and in activities of daily living, highlighting the negative toll the disease poses on quality of life for those with MG. “More effective treatment strategies would enable patients to lead more productive liv ..read more
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3 tips for applying makeup without exacerbating MG symptoms
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Shawna Barnes
1w ago
Makeup is one of those things that we women use to “put our face on,” so to speak. But when we start having trouble holding our arms up due to myasthenia gravis (MG), applying makeup is one of the first things to go. MG takes many things away from those of us who have it, but feeling feminine, girly, or pretty shouldn’t be one of them. I recently started my own business, so I’m back in the public spotlight, so to speak. I started looking for ways to apply makeup that don’t exacerbate my MG symptoms. The following are my top three tips on how to “apply your face” without making your masca ..read more
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Life taught me that nothing is guaranteed, so I live in the present
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Mark Harrington
1w ago
“Watch, therefore, for ye know neither the day nor the hour wherein the son of man cometh.” — Matthew 25:13 These words have been at the forefront of my thoughts in the past few weeks, following the sudden deaths of two family members. The quote reminds us that everyone has an appointment with death. While it may not be scheduled in our phones, we won’t be late for this appointment. This makes each moment precious. Life with myasthenia gravis (MG) heightens both the preciousness and the tenuousness of each day. In my salad days, I believed a natural progression existed in our lives. We a ..read more
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FDA OKs clinical testing of new cell therapy for hard-to-treat gMG
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Steve Bryson, PhD
2w ago
The U.S. Food and Drug Administration (FDA) has given the green light to Iaso Bio to start clinical testing of its BCMA CAR T-cell therapy equecabtagene autoleucel, known as Eque-cel for short, in people with generalized myasthenia gravis (gMG) who live in the U.S. Clearance of the company’s request, which came in the form of an investigational new drug (IND) application to the FDA, follows a recently published investigator-initiated study detailing how the cell therapy led to sustained physical function gains in two people with hard-to-treat myasthenia gravis in China. “We are very pleased t ..read more
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Azathioprine, MMF effective, but more studies needed: PROMISE-MG
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Lindsey Shapiro, PhD
2w ago
No significant differences in clinical outcomes or quality of life were observed between myasthenia gravis (MG) patients treated with azathioprine or mycophenolate mofetil (MMF), results from the PROMISE-MG observational study show. While “more comparative effectiveness studies are required,” the findings “provide important information for the clinical management of patients, as the algorithm of myasthenia gravis treatment evolves,” the researchers wrote in “Comparative effectiveness of azathioprine and mycophenolate mofetil for myasthenia gravis (PROMISE-MG): a prospective cohort study ..read more
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Rescue therapy use can reduce myasthenic crisis deaths: Scientists
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Andrea Lobo
3w ago
Timely rescue therapy use during a myasthenic crisis — a life-threatening complication of myasthenia gravis (MG) marked by severe breathing problems — can reduce mortality among patients. That’s according to new findings from researchers in China, who investigated risk factors associated with prolonged mechanical ventilation, which is commonly required for people with MG who experience a myasthenic crisis. Their study identified thymoma — the presence of a tumor in the thymus — levels of carbon dioxide in a patient’s blood before a crisis, and pneumonia as independent risk factors for prolong ..read more
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When chronic health diagnoses cloud the treatment of acute issues
Myasthenia Gravis News » Hacks, Suggestions, and Tips for Living with Myasthenia Gravis
by Shawna Barnes
3w ago
For the first time in a long time, I was frustrated with care that I had received. I recently had to go to a hospital emergency room, where, unfortunately, I didn’t feel that I was being heard as I tried explaining that something other than myasthenia gravis (MG) was wrong. Whatever it was, I believed it was causing my MG to flare. The evening started off innocently enough. I was home, relaxing on the couch with Andy, my semiretired service dog, when my right cheek started itching and burning. I washed my face and applied some ointment I have for a skin condition, but the burning and itching ..read more
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