Ewmimi
Forum Replies Created
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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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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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My doctor at the LU Med Center got me enrolled in the program for zilucoplan. Went thru the vaccinations and work with Panther RX (pharmacy for rare disease) for the drug. Daily injections. On my 11th week. I have been on Prednisone for 3 years up to 100mg! Tried cellcept and immuran but my liver did not like them. IVIG every 3 weeks kept it under control for awhile. Did plasma exchange as well. I have had a thymectomy right after diagnosis in 2021. Zilucoplan is the only thing helping me. As I said, on week 11 and off Prednisone and tapering IVIG. If you can do it, I highly recommend. Not all MG types qualify. My doctor has been my miracle. Went from an almost invalid to working out again for an hour daily!