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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.

What are infusions like for lupus patience?

A MyLupusTeam Member asked a question 💭
Stonewall, OK

I just received this text, I'm worried because I was not informed of the possibility of having to do infusions. I'm honestly scared because Noone has fully told me that a 100% have lupus.

July 7
 · 
Be the first to react
A MyLupusTeam Member

Please share your concerns with your doctor and request confirmation of your diagnosis. Let them know that you would like to know exactly what the infusions were prescribed for before scheduling them. I suggest you read the doctor's notes and summaries thoroughly. If you don't have a patient portal, request a copy from the office. Please do not hesitate to ask them to explain things to you clearly.

July 7 (edited)
MyLupusTeam

It's completely understandable to feel scared and overwhelmed right now — not knowing your diagnosis for certain while also hearing about infusions is a lot to process at once. Take a breath. You're not alone in this.

First, it's worth knowing that a lupus diagnosis can sometimes take time to confirm. It's okay to ask your Show Full Answer

It's completely understandable to feel scared and overwhelmed right now — not knowing your diagnosis for certain while also hearing about infusions is a lot to process at once. Take a breath. You're not alone in this.

First, it's worth knowing that a lupus diagnosis can sometimes take time to confirm. It's okay to ask your doctor directly: "Do I definitely have lupus?" You deserve a clear answer before any treatment decisions are made. As for infusions — one common infusion treatment for lupus is called Benlysta (belimumab). Here's what to generally expect:

- Infusions are given at a medical clinic by a healthcare professional
- Early appointments are usually every two weeks, then shift to once a month
- Some people feel fatigued or wiped out for a day or two afterward
- Others tolerate them well and start seeing positive results over time

Possible side effects to be aware of include:
- Rash, nausea, or headache
- Muscle pain or facial swelling
- Increased risk of infections The most important step right now is to have an honest conversation with your doctor. Some helpful questions to ask include:

- "Do I definitely have lupus?"
- "Why are infusions being recommended for me?"
- "What should I expect in the coming weeks?"
- "Are there other treatment options?"

You have every right to fully understand your diagnosis and treatment plan before moving forward. 💙

July 7

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