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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