Three years ago, after I had a thymectomy and before I started high doses of prednisone to treat my myasthenia gravis (MG), I weighed in at a comfortable 170 pounds. After I was prescribed 20 mg of prednisone a day, I managed my weight OK for a while.
Here in the United States, the richest nation in the world in terms of nominal gross domestic product, medical expenses are the No. 1 cause of bankruptcy. People in the rare disease community are well aware of this and among the hardest hit. Seven years ago, I went…
Generalized myasthenia gravis (gMG) may be associated with a deficiency in a type of immune cell called myeloid-derived suppressor cells (MDSCs), a study suggests, and that restoring their function and increasing their numbers may help reduce symptoms. Treatment with immunosuppressants resulted in an expansion of MDSCs, which was linked…
The U.S. Food and Drug Administration (FDA) has placed a partial clinical hold on Phase 3 trials that are testing Sanofi’s experimental BTK inhibitor tolebrutinib. The move affects a trial in people with myasthenia gravis (MG), as well as several studies evaluating tolebrutinib for different…
Around age 5, I began having difficulty walking. A couple of times a day I would get a strange, pins-and-needles sensation in my right leg. I was young and didn’t think much of it. When my parents became aware, they were concerned. Multiple doctors told us not to worry. My…
Contrary to increasing evidence, high-intensity inpatient rehabilitation was not found, in a Japanese study, to speed the recovery of people with myasthenia gravis (MG) who were intubated after a myasthenic crisis. Instead, according to researchers, “high-intensity rehabilitation was associated with delayed recovery in the ADL [activities of daily living],”…
European regulators have recommended efgartigimod be approved as an add-on therapy for adults with generalized myasthenia gravis (gMG) who have anti-acetylcholine receptor (AChR) antibodies. This recommendation, from the Committee for Medicinal Products for Human Use (CHMP), will serve as the basis for a final regulatory decision from the…
It’s the last Monday of June. The last Monday of National Myasthenia Gravis Awareness Month. Last week, I shared some tips for both myasthenics and our friends and family on how you can continue to turn awareness into action long after this month is over. As the month…
In the book “Man’s Search for Meaning,” Viktor Frankl writes, “If there is meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.” A…
Soliris (eculizumab) safely and rapidly led to clinical benefits in people with generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor antibody positive, according to data from a small real-world U.S. study. Moreover, most patients discontinued maintenance immunomodulatory treatment. The study, “Safety and outcomes of eculizumab for acetylcholine…
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