Tips for Benlysta Infusions

Since 2011, people with lupus have had our very own biologic medication: Benlysta (belimumab). While it doesn’t work for everyone, many have found it to be an outstanding treatment for their lupus.

As a biologic therapy, it’s only available as an injection or infusion. Each route has its advantages – injections are convenient and allow for weekly doses while infusions are better for people who struggle to self-inject or have certain side effects. I couldn’t do Benlysta injections because they caused terrible insomnia, so I tried infusions, which fortunately didn’t interfere with my sleep.

Here are all my tips for making sure you have the best infusion experience possible.

The day before before your Benlysta infusion

• Educate yourself about Benlysta as best you can and go to your rheumatologist with any fears, questions, or concerns.
• Seek support. Request a free Benlysta Information Kit and sign up for Benlysta Cares, which provides support – even a nurse ambassador.
• Consider the time. Decide what time of day is best for you to sit for a long infusion and whether or not you’ll need someone to drive you.
• Drink a lot of water the day before your infusion; it will help your body to process the medication and make it easier to have an IV line placed.

The day of your Benlysta infusion

• Hydrate. Continue to drink a lot of water.
• Request a bag of saline to run before or alongside your infusion, if possible. Staying hydrated and adding saline may help with post-infusion headaches and tiredness.
• Pre-medicate. Doctors may approach this differently; mine had me take 1000mg Tylenol and 10mg Claritin right before my infusion for the first 3 infusions. This is to help with any possible allergic reactions and headaches. Since I didn’t have any reactions, she stopped requiring this after the third infusion.
• Bring any comfort items you might need – keeping in mind that you may be there for 2-3 hours. You will likely be provided with a pillow and blanket (you can call before and ask) or you can bring your own. It may help to treat yourself to something special, especially if you’re anxious about infusions (like I was). Consider bringing a heating pad, book, water, or snacks, as well as having something ready to watch or listen to on your phone. Many infusion suites have fluorescent lights, so a hat and sunglasses will help if you’re sensitive to those.
• Dress warm. I found that my arm and body would get cold as the meds went in. I dressed warmly for each appointment and still needed a blanket to keep from getting chilly. Keep in mind when dressing that you may need easy access to your elbows or arms for your IV.
• Speak up. Tell the nurse if you’re uncomfortable in any way – especially if you start itching or have other signs of an allergic reaction. You can also ask to slow down the drip rate of the infusion if you’re having any issue with it.
• Prepare for post-infusion. You will likely be very tired after your infusion and you may need downtime or help.

The day after your Benlysta infusion

• Know what common side effects to look out for. I experienced a lot of tiredness and leg pain, and after my third infusion, I started to experience depression.
• Expect to rest. You may be tired for several days after the infusion, try to plan for a restful period if you can.

Additional tips to consider

• Understand things change. If you had a difficult time with your first infusion, don’t be afraid to try again as long as it’s safe. For example, my hand was painfully bruised after my first infusion, so the next time we used a different vein and things were much better. Check if there are any changes you can make to improve things and remember that it can take up to 6 months to feel the full effects of the medication.
• Consider joining a support group. I attend a local lupus support group and also found a lot of advice in the Benlysta Buddies 2.0 Facebook group.
• Keep an eye out for infections and contact your doctor right away if they occur. You will be more susceptible to them and they can be serious, plus you’ll likely need to pause infusions when fighting off certain acute illnesses.

Do you have any infusion tips?