Posted , 3 users are following.
Discoid lupus doesn’t seem to be improving despite methotrexate and hydroxychloraquine ... getting me down now as people keep staring at my face like I’ve got the plague.
Still working but seriously don’t want to go out anywhere now .
Anyone been similar but did improve??
0 likes, 3 replies
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christie5167 tracey93481
Posted
I had exact same outcome with those meds. Years later and we still can't find one that works. Only thing that works is prednisone. I've been on prednisone almost 3 years now. Only difference is I also have cutaneous vascilitis as well. So my skin burns and itches. Next stop is benlysta.
tracey93481 christie5167
Posted
My skin burns and itches like mad .
Sometimes can’t sleep with it .
Can I ask you what Benlysta is ??
Thanks xx
christie5167 tracey93481
Posted
I have yet to find out. From what I understand it is either given intravenously or via shots at home. Docs keep pushing it and I'm so reluctant, they say I'm out of options. I'm not one whom likes meds but it beats the burning and itching. I find that lavender and peppermint oils really help but you have to get the good stuff. I'll keep you posted, I'm currently back up to 20mg prednisone so it'll be a while before I taper back down, then taper off mycophenolate, then start benlysta. I'm still researching in the meantime...