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Is the future brighter for LEMS?
Hey all!
One of the advantages of living in today’s world is that treatments for chronic diseases are constantly evolving!
Although there isn’t officially another treatment option for LEMS YET, I wonder if one might be on the horizon.
I’ve heard about a few drugs that have been approved for treatment for Myasthenia Gravis including Zilbrysq and Ultomiris which work similarly to block C5 (a part of the immune system that is responsible for damage and inflammation in our bodies).
Vygart is also another treatment I’ve heard about for MG.
Have any of you talked with your doctor about these options being available for LEMS patients in the future?
I heard a rumor that there may be a study developing for Vygart for LEMS but haven’t been able to confirm if that’s actually true!
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6 Replies
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My doctor said that a clinical trail using an MG drug is forthcoming and the eligibility specs would include LEMS patients on IVIG and Firdapse. Said I would be eligible, no upper age limits in the study criteria
Also recall that I expressed concerns about the nightmares since I was diagnosed
See this study of lupus regarding nightmares
Deborah
health.ucdavis.edu
Nightmares and hallucinations could signal autoimmune disease
An increase in nightmares and hallucinations could signal the onset of autoimmune diseases such as lupus, according to a new study.
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Deborah, That’s awesome news!! I would love if you could keep us posted if you hear anything else!
Wow, that article is fascinating! I’m glad you shared the correlation with us and that you were able to get your concerns validated. I wonder what signals the brain to have these nightmares and if you could quantify it to predict a flare.
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I spoke with Argenx a few months ago and was told there were no plans at that time for a trail of Vyvgart for LEMS patients. I will check again.
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I have received a reply from my inquiry with Argenx and, as before, there are no current plans for a study with LEMS patients. I wish I had better news.
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Thanks for checking Price, That’s a bummer!
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Price, thank you for checking. Deborah
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