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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is Anyone Taking The New Lupus Drug Saphnelo?

A MyLupusTeam Member asked a question πŸ’­
Sacramento, CA

I just started getting Saphnelo infusions every four weeks after Benlysta stopped working for me. Is anybody taking Saphnelo and is it helping? Are you having any side effects? So far for me it's too soon to tell.

February 12, 2023
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A MyLupusTeam Member

Hello -- I am going for my 3rd infusion of Saphnelo today. The first 2 times left me really tired the next day. Sometimes I've wondered: is it worth the cost? I tried the at-home Benlysta shots for about 5 months a few years ago and didn't notice any improvement. My goal is to give this Saphnelo more of a chance. Sometimes my symptoms seem to be improving and then I'll end up in bed for a day or two and think it was all in my head. Overall though I would say my symptoms are less than they were 6 months ago. Praying for you both as you and your healthcare team figure out what's best for you.

April 5, 2023
A MyLupusTeam Member

Update: After being on Saphnello for six months and only feeling worse, my Dr. stopped it and put me back on Benlysta. After taking it for three months I started feeling better and am still feeling better at six months. Maybe my body just needed a break from Benlysta to work again.

December 15, 2023
A MyLupusTeam Member

Thank you! I hope you feel better!

April 5, 2023
A MyLupusTeam Member

Thank you for your answer! Sometimes I think I notice that I'm feeling better but not in a big way yet. In two weeks it'll be three months since I started it. Maybe it's too soon to tell. Best of luck!πŸ™‚

April 4, 2023
A MyLupusTeam Member

So sorry to hear that! I hope you’re feeling better very soon!

December 27, 2023

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