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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.

I'm wondering about experiences with IV Benlysta (belimumab). I got a new rheumatologist that I like & I start the IV tomorrow.

A MyLupusTeam Member asked a question 💭
Annapolis, MD

I've had a rough few years both knees replaced ,things looked great then I started going backwards & am no longer able to walk more than a couple steps with a rollator.. It's been getting worse & I have seen many Drs. I had a spinal surgery after a mass was found in April & the hope is reducing inflammation helps. Hopefully this medicine helps reduce inflammation & other lupus symptoms. They think my inability to walk is likely the mass but could have multiple causes. I also had a thiamine B1… read more

July 1
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Learn more about the drug treatment mentioned above.
MyLupusTeam

What are other people's experiences with IV Benlysta (belimumab) infusions, and what should be known about immune suppression risks?

First, it's worth saying — what a journey you've been through. Starting a new treatment after so much can feel both hopeful and nerve-wracking at the same time. That's completely Show Full Answer

What are other people's experiences with IV Benlysta (belimumab) infusions, and what should be known about immune suppression risks?

First, it's worth saying — what a journey you've been through. Starting a new treatment after so much can feel both hopeful and nerve-wracking at the same time. That's completely understandable.

Belimumab works by blocking a protein called BLyS, which drives overactive B cells (the ones causing lupus-related inflammation and damage). By targeting this, it can help reduce lupus disease activity over time. Regarding immune suppression, the concern is valid. Known serious risks include:

- Increased infection risk — since the immune system is being modulated
- Certain cancers (rare but noted)
- Depression or mood changes — worth monitoring closely

Let your doctor know immediately if you notice any signs of infection or shifts in your mental health. For the infusion itself, reactions can happen during or after. Watch for:

- Rash or swelling (especially in the face)
- Nausea or fatigue
- Headache or muscle pain

Infusion centers are prepared to manage these, and pre-medications can be given to reduce the risk. From MyLupusTeam members, experiences vary. Some reported fatigue lasting a day or two after infusions, while others tolerated them well and began noticing improvements in skin, joints, and overall lupus activity after several months.

Patience is key — it can take months before the full benefits are felt. Wishing you a smooth first infusion tomorrow! 💙

July 1

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