Has anyone done the Benlysta infusions?

, I'm sorry you are experiencing unpleasant side effects since starting your Benlysta infusion. Fatigue is certainly a common side effect when first starting. I hope there is some comfort in knowing that you are not alone. One of our patient leaders wrote an article about tips for Benlysta infusions which includes some post-infusion tips: https://lupus.net/living/tips-benlysta-infusions. I hope there is some helpful information in there for you! Sending warm thoughts your way
Gabby (team member)

hold on tight it gets better. Onboarding can take a lot out of you. I had to rest a lot and hydrate to beat the fatigue and headaches. As you move forward in your infusion regimen and your body begins to respond it will get a little easier. Sometimes it’s the simplest things that can help.


Rest, hydration and giving it some time to settle in can make a difference. Sometimes you’ll just have to sleep it off and start again the next day. Also are you taking pre meds before infusions? This can contribute to how you are feeling afterwards.


I’m holding space for some relief for you. But if you stick with it, it will all begin to calm down and begin to help some. It won’t be overnight but you may begin seeing small changes. If the symptoms get too bad talk to your doctor about how he can help with combating it all maybe adding extra saline to hydrate more can help also. ~Racquel~ lupus.net team member

unfortunately, it's hard to know if the side effects will get better or remain the same. The only way to find out is to stick with it. My doctor told me it can take 3 to 6 months for a biologic medication to reach it's full effect in your body and for the side effects to stabilize. Even so, some of my friends on Benlysta still struggle with side effects every time. You will only know if there are side effects down the road if stay on the treatment. And you may have to decide if the benefit of the medication is worth any of these unpleasant side effects that may remain.


I wish I could give you a clearer answer, but this disease and these medications are so tough and complex. I encourage you to talk to your doctor, because they may have a very good reason why they want you on these infusions and they may have feedback about your side effects. Please let us know how you're doing! Wishing you the best. -Ava, lupus.net team

Thank you! My doctor suggested I stick with it for at least 6-7 months unless major side effects come up. He did warn me about the fatigue and headaches but I guess I didn’t realize how much I would be affected. I do feel a little better this week after my second infusion so we’ll see what happens! I don’t know very many people who have lupus or any other autoimmune illness so I wanted to hear from people that have gone through it instead of just hearing it from my doctor. So, thank you so much for taking the time to respond and share your experience!