Does anyone have experience with ENSPRYNG® (satralizumab)?
Posting on behalf of a community member: Hi- does anyone have experience with Satralizumab? The first dose caused a relapse in my vision and loss of mobility in my lower extremities. I now have the second dose approaching next week and am scared and am looking to hear others' experiences.
unfortunately I wasn’t able to find anyone sharing their personal experience. I’m sorry you had such a startling experience with your first dose. Did your doctor offer any insight or thoughts on how to proceed? If you’re comfortable, please let us know how you’re doing. We’ll be thinking of you. Best wishes, Julie (team member) Hello. Thank you in advance. My neurologist and immunologist informed me that the relapse may have been developing before the first dose. He ordered MRIs with and without contrast of my brain, optic nerve, and spinal cord because I've lost mobility and can no longer walk. Therefore, the only remaining option is to continue with Satralizumab because I've already had seven sessions of plasmapheresis. It's the only thing they can do to prevent me from going blind in my other eye.
Hi I have been taking ENSPRYNG for nearly 3 years. I am doing well and tolerating it, there are some sideaffects like headaches, but it has made my quality of life far better. Nearly 3 years and i have not had any relapses
Thank you for your reply. I suppose I'll have to wait. I've lost mobility in my legs and received my second dose of Satralizumab yesterday. They explained that because I'm having nighttime flare-ups, they'll have to admit me to the hospital for another plasmapheresis and then monitor my progress. Obviously, everyone's body is different, but I'm hopeful I can pull through. Best wishes to all.
