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Zilucoplan
I have been on Zilucoplan/Zilbrysq for 11 weeks now. Looking for anyone else who has experience with this new treatment.
I was diagnosed with Myasthenia Gravis in the spring of 2021. I was a runner and it started with my foot slapping and not picking up when I ran. Then came the double vision followed by droopy eyelids. I had a thymectomy robotically a few weeks later. My weakness worsened where I couldn’t even open my eyes, I fell constantly and had trouble eating and swallowing. I lost 30 pounds. I was put on 100mg Prednisone and was basically an invalid. My husband retired to take care of me – or I would have been in a care home. My neurologist went on medical leave in the fall of 2021 and referred me to a neurologist in Kansas City at the KU Med Center. He specialized in MG and was my savior and miracle worker. By the time my appointment rolled around in January of 2022, I was so weak. My appointment was to be one of nerve tests and a plan however, once he examined me, he direct admitted me at KUMC. I was in a wheelchair by then. I had 7 plasma exchanges and was there 17 days. I was stronger by the time I was discharged. He then scheduled IVIG load up for 5 days and then once every 4 weeks. He tried Azathioprine and Cellcept but my liver did not like it so I stayed on high doses of steroids along with Mestinon. My symptoms were about 75% under control but when he tapered me to 10mg or under of Prednisone, they would return and I’d be back up to 20-40mg. During one visit in the fall of 2023, he asked if I’d like to try a new treatment that he was in on for clinical trials and research. He said it would be life changing for me and my type of MG. I was all in! It was recently FDA approved and to be in the USA in January of 2024. I went thru the series of the Meningitis vaccinations and was ready once he got me enrolled in the program. I work with a rare disease pharmacy called Panther RX out of Pennsylvania. They have been wonderful. This treatment has been all my doctor said it would be. I am now off of steroids and only take Mestinon when I need a boost. I resigned to myself I will never run again but I work out for an hour a day on my elliptical and lift light weights. Still trying to lose the steroid weight which is being stubborn!
I just would like to connect with anyone else that is using Zilucoplan and your experiences.
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