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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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4 Replies
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Hi Ewmimi , I’ve just started Zilbrysq myself. Trying to count the boxes in my head. Round 6 weeks now . It’s working well for me also. I was diagnosed with myasthenia gravis in 2006. I’ve pretty much done everything that there’s to do out there. I even did a high dose of Cytoxin in 2015 to reboot my immune system. Which really helped me for awhile. My journey started out like yours. I was a surfer and started to have lots of unusual eye lid ,speech and swallowing issues. I went to 5 different doctors looking for the problem. It took almost a year to get a diagnosis.
I am currently doing Plex twice a month and doing Zilbrysq injections 1 a day . If I were to say this is best so far I can’t just yet. But my eyes are doing so much better than they have in a while. I would love to chat more with you to see how you are doing. There is so much I’ve left out of my journey with MG but it doesn’t matter. MG Suck lol and we are looking for the cure! Lanette
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So happy to hear you’re on Zilucoplan as well. Were you ever on steroids or IVIG? I’ve been on steroids for 3 years and IVIG infusions for 2. I was finally able to stop the steroids as of 4 days ago! They have caused damage to my spine and just bones in general. But trying to get that under control with an endocrinologist. I had a total hip replacement 7 months ago and boy did that set me back. My MG flared huge and had to start a higher dose of steroids again but since the new injections, I am healing, moving and off steroids, which was our goal! Yes, MG sucks big time. So glad to connect with you!
Tina
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I started Zilucoplan almost 3 years ago. the first 3 months were placebo, and then I started receiving the real thing.
it’s a miracle “drug” I have been stable for almost 2 years.
when I receive the injection in the morning, my eyes open, my posture straightens out and I can function.
I still have major breathing issues, pain, and fatigue. I don’t sleep well, and wake up during the night, trying to catch my breath.
unfortunately, I have other medical issues, which add to the stress in my body.
I’m now able to do physio, for almost the full hour.
i am grateful for every single injection.
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Agi, so good to hear you have sustained the results from this treatment for 3 years! Gives me hope. Continued good luck.
Tina
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