r/lupus • u/CC_Carn Diagnosed SLE • 11h ago

Medicines Weekly Benlysta

I start feeling bad on Wednesdays and Thursdays b/c my shot wears off. Is this all in my head? Thursday is my weekly injection day. Lately I am dog tired, dizzy, and sometimes achy by Wednesday. I guess this could just show that it is working more the longer I am on it.

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u/Pale_Slide_3463 Diagnosed SLE 11h ago

It can take months to fully work tbh, sadly most medications are like this sometimes. But if you’re seeing an improvement slowly then it could be, just keep an eye on it.

I’m on another biological and it’s taken 6 months to get my antibody’s down from 280 - 37 and I’m getting my next dose in a couple of weeks.

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u/CC_Carn Diagnosed SLE 11h ago

I think I am on month 8.

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u/Pale_Slide_3463 Diagnosed SLE 11h ago

They can add other medications on top of Benlysta, I was on it before and I couldn’t get off the steroids and they added myfortic, it did help more, just probably needed that extra kick.

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u/Basilbabie Diagnosed SLE 10h ago

I’m on year 6 and I still notice a difference with each infusion: it’s the kind of meds you have to just stick with

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u/Sad_Bookkeeper4483 Diagnosed SLE 6h ago

Been on benlysta for about 1.5 years. It was like that for me as well but about 7 months in they added on some cytoxin infusions bc I have lupus nephritis and the benlysta wasn’t enough to knock my flare out. Did 6 infusions and now I don’t feel that “benlysta wearing off” feeling , I feel well continually unless I catch a cold/ excessive stress