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Jessica replied to the topic What happened to efgartigimod/Vyvgart for seronegative MG? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 1 month, 1 week ago
This is why there is no FDA approval for us seronegative ab patients.
https://www.argenx.com/news/argenx-announces-positive-topline-phase-3-adapt-trial-results
The trial was done on both AChR positive and negative patients. There are 2 reasons the FDA did not approve the drug for seronegative and musk patients, is because the sample was too…[Read more]
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Jessica replied to the topic Weight Gain and Loss in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 month, 3 weeks ago
I lost 20 lbs due to being in the hospital,not being able to swallow anything even my own saliva, and not given any substitutes like TPN for 16 days. When I was able to take in purées, I was started on prednisone at extremely high dose and gained it all back and then some. Now that I finally can eat solid foods, I am afraid I will continue…[Read more]
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Jessica replied to the topic Career Changes with Myasthenia Gravis in the forum Working/Careers and Myasthenia Gravis 1 month, 3 weeks ago
I was emergency unit registered nurse for 47 years and I had to retire. I could not do CPR on anyone, go at the same pace without lots of rests, start IV’s due to lack of manual dexterity, I could not fit all my doctors appts, treatments and therapies in with my schedule ( 12 hour shifts), my husband had to drive me to work because I have a s…[Read more]
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Jessica replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 1 month, 3 weeks ago
Weaning off prednisone now, going from 60mg. My neurologist says it will take up to a year to come off, she plans on going extremely slowly when I get to 20 mg ( 5 mg every 3 months) so as not to rebound. So far only good things have happened . My belly is down by half, the puffiness of my face is almost gone, and my neck and the back of my neck…[Read more]
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Jessica replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months ago
These are the links to the exercises they are both the same if one does not work try the other
https://youtube.com/playlist?list=PLvJ7HXj75I1qN-_YjbhjfDf9npBaE0AK_
Or
You can find all the content at this link: https://tinyurl.com/mytux23s
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Jessica replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 1 week ago
I am new here so I am not sure if I a can put the url link here. If I can I gladly will. It was sent to me by my support group leader and they are free. In the mean time, they are also on utube
Type TEXAS WOMEN’S UNIVERSITY PHYSICAL THERAPY in the search box. There are five videos, the first one is watch me first. It has the instructions ab…[Read more]
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Jessica replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 1 week ago
I was diagnosed August of 2021. Since then I have been in crisis twice before October. I got my neurologists blessing to start an exercise program one month ago so now every other day in the morning when I am strongest I put on a video done by PT students of Texas university that was made for MG patients specifically. They produced 4 videos,3 e…[Read more]
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Jessica became a registered member 2 months, 1 week ago
Hello, Jessica! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, families, and medical professionals! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.
Please familiarize yourself…[Read more]