Preparing to Start Infusion Treatment for Lupus

For over 50 years, there were only 3 FDA approved drugs for lupus: hydroxychloroquine, corticosteroids, and aspirin.¹ Other medications, such as immunosuppressants and chemotherapy, have been used off-label to successfully treat lupus. In recent years there's been extraordinary development and hope for new lupus treatments.² But right now there is only one available drug made specifically for lupus: Benlysta.

Approved by the FDA in 2011, Benlysta (belimumab), is a biologic therapy and immunosuppressant. It’s made from living tissues and must be administered by infusion or injection. It lowers immune system activity by reducing the level of B cells, which are responsible for some of the unruly autoantibodies that cause harm in lupus.³

My experiences with Benlysta

Last year, I tried Benlysta self-injections for 3 months, but ultimately stopped due to terrible insomnia. Ironically, Benlysta was treating my lupus fatigue rather well, but insomnia just replaced it with a different kind of tiredness.

When I decided to stop the self-injections, my rheumatologist urged me to try infusions instead. She explained that side effects from infusions shouldn’t be as constant – instead, they would likely only last for 3-5 days post-infusion.

I was skeptical that large doses every 4 weeks would be easier to deal with than small doses every week. I also knew that my friends on infusions dealt with huge fluctuations and often felt worse the week before their next infusion. I ultimately declined infusion therapy because of its time-consuming nature - at the time I didn’t have enough childcare to manage it.

Ten months later, with the encouragement of a different rheumatologist and desperation from ever-worsening lupus symptoms, I found myself sitting in the infusion suite.

Feeling anxious about infusion treatments

Once I agreed to start infusions things happened rather quickly, likely since I had already gone through the approval process for self-injections the year before. One week after begrudgingly saying “yes” to my doctor I found myself standing at my kitchen counter making an appointment for 2 weeks later. The call caught me unaware and left me feeling very overwhelmed and stressed.

I was anxious about having an intravenous (IV) treatment (I have an IV line phobia), the possible side effects, and – most of all – about spending so much time in a medical office during COVID-19. My appointment window was 2.5 hours, though my friends said to expect up to 3 hours.

I know many people who treat their Benlysta infusions as if they were a spa day. They take along their coffee, heating pad, and favorite book, and plan for some “me time”. But I had to wear a face mask and weather the tensions of COVID-19, so I felt like I was being robbed of something that would help me cope. I was rather a mess, but I called the infusion nurse to talk about my concerns and felt better afterward.

I also reached out to my lupus support group to ask for infusion tips and received nearly a book worth of advice! The most important strategy was to hydrate profusely before, during, and after, and to ask for a bag of saline. This helps to reduce the severity of common post-infusion headaches. My lupus friends also told me to plan for downtime after the infusion and have help ready for the day after, since I may be very tired while my body processes the medication.

Making a Benlysta infusion plan

Benlysta infusions start with loading doses, which are designed to quickly get medication into your body at its therapeutic dose. They are scheduled for week 0, week 2, and week 4, and are the same strength as the regular infusions that follow every 4 weeks.

Without these loading doses, it would take much longer for the medication to be effective. Even with them, it still takes 6 months for Benlysta to take full effect. So, armed with advice from my friends and comfort for my anxiety, I scheduled all three loading doses with a mix of bravery and apprehension.

Next up in my Benlysta series is a detailed post about my first infusion experience.