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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.

She is pulling to start infusion

A MyLupusTeam Member asked a question 💭
Trinidad, CO
July 27
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MyLupusTeam

Starting infusion therapy for lupus is a big step, and it's completely normal to have questions or feel a little nervous. Infusion therapy is typically given at a medical clinic by a healthcare professional through an IV.

One of the most common infusion medications used for lupus is belimumab (Benlysta). Here's what to Show Full Answer

Starting infusion therapy for lupus is a big step, and it's completely normal to have questions or feel a little nervous. Infusion therapy is typically given at a medical clinic by a healthcare professional through an IV.

One of the most common infusion medications used for lupus is belimumab (Benlysta). Here's what to generally expect:

- Schedule: The first three doses are usually given every two weeks, then it shifts to once every four weeks as a maintenance dose
- Infusion reactions: Some people experience reactions during or after the infusion, including rash, nausea, fatigue, muscle pain, headache, or facial swelling
- Post-infusion fatigue: Some people feel wiped out for a day or two after their infusion — so it's worth planning for some rest time afterward
- Results timeline: It can take a while to notice improvements, so patience is key

A MyLupusTeam member shared that after switching from infusions to injections, they started having more good days and noticed positive skin and joint changes, though experiences vary from person to person. Always let your doctor know right away if you experience side effects or feel your symptoms are worsening. They can adjust your treatment plan to better suit your needs. You've got this! 💪

July 27
A MyLupusTeam Member

It took a long time before I was able to start getting an infusion because my doctor's office was requesting it through the drug portion of Medicare, but it goes through Part B. I started with Orencia, and it didn't work well for me, but then I started Actemra, which is made for those who have trouble with infusions. It is too soon to tell if it is working, but I have high hopes.

July 29
A MyLupusTeam Member

Ive been taking Rituxan infusion therapy for quite some time. I 'm glad to say that it has helped . I take it every 6 mos. I can tell with my joints when it gets close to taking it. If you ever have or know of someone needing financial assistance paying for it. Reach out to the company that makes the medicine. Because they offer scholarships. Take care ,have a blessed day.

July 29
A MyLupusTeam Member

If you're uncertain, I suggest a second opinion, preferably at a university medical center.

July 28

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