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Information for Parents and Caregivers

Morgan

Actual patient
receiving BENLYSTA

When someone in your life is diagnosed with lupus, it is important to learn how to care for them. Help your loved one by learning about their condition and how to deal with it together.

Learning is the first step to helping your child or loved one

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Get the facts about living with lupus

 

You should try to learn as much as you can about lupus. Not only so you’re able to recognize symptoms and possible emergencies, but also so you can help educate your child/teen or loved one about their condition.

 

Learn more about living with lupus

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Help them speak about their lupus

 

Teaching your child/teen about their lupus diagnosis is important, since it will be part of their day-to-day. Remember to adapt the conversation to your child’s/teen’s maturity level.

 

Download our pediatric caregiver resource

 

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Prepare them for their first infusion

 
Your child’s/teen’s treatment will be given as an intravenous infusion that takes about 1 hour. You should be ready to spend a couple of hours at the doctor’s office/hospital/infusion center, and plan to interact with doctors and nurses. It may be useful to bring a tablet or activity book to help your child/teen pass time during their infusion.

 

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Learn about infusions

Your child or teen will receive BENLYSTA as an infusion. Listen to other BENLYSTA patients talk about their infusion experiences.

Karen: The first day I received my BENLYSTA infusion I think I was a little nervous about being stuck with a needle and sitting there that long with my arm still for the infusion process. I took my mom with me and we talked and watched TV and it helped pass the time. I think the first trip is something new, something different, and you’re a little apprehensive about that. The infusion process begins with getting your vitals taken and your weight. The medication is mixed based on your weight, and then they prep your arm, the vein that they will use to infuse the BENLYSTA, and once the medicine is ready and they start the infusion, you just wait, and I usually pass my time either reading, I take my computer sometimes, and I have gotten to know all the staff, so usually we sit and talk and visit. It’s a way for me to catch up on what’s going on in their lives. The tips I would give on the day of your infusion, just come comfortable and bring something to read, a friend to chat with, your computer. Most infusion rooms do have a television you can watch.

Lacy: When I showed up at my doctor’s office to receive my first infusion for BENLYSTA, of course I was feeling a little bit anxious and afraid, if you will, uncertain about the drug itself and, of course, the infusion process. The whole process takes about an hour once they get the IV set for you.

Katrina: My BENLYSTA infusion, the whole process normally takes about two hours. The infusion itself takes about an hour, and I do this every four weeks.

Sheba: Once every four weeks I take an afternoon basically off. My work schedule is quite flexible. I actually make my own schedule, so I’ve been able to take the afternoon off and I get the afternoon to just get my infusion and read a book or watch a movie and I get my treatment, and I have been known to take a few work phone calls during the treatment as well, but mostly I try and relax. You can read, you can play a game on your phone or watch a movie. I mean, that’s how I look at it. My mother takes me to each one of my BENLYSTA treatments. She sits right next to me and we spend the time together talking and we get to spend the time together also on the drive there and back.

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Involve your loved one in their treatment plan

 

Teach them about their condition and how to identify symptoms

  • Encourage your child/teen to speak up during doctor visits. Allowing your child/teen to talk to their doctor and nurses can help decrease the fear they might be feeling.

  • Allow your child/teen to make choices about their care needs. This will promote independence and responsibility, especially in teenagers.

  • If necessary, encourage your child/teen to talk to a counselor who will teach him/her to develop healthy coping skills for living with lupus.

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Caregivers of patients with lupus

 

If a loved one has been diagnosed with lupus, you may assume the role of their caregiver. Here are some helpful tips for you and your loved one: 

  • Work together to understand the disease as much as you can.

  • Learn to communicate. Lupus is a big change in both your lives, and you may need time to adapt.

  • Create a care file with personal information, medical records and emergency contacts.

  • Develop a care plan to help address your loved one’s care needs, and to identify problems that may arise.

 

Frequently Asked Questions

See the BENLYSTA experience from their perspective

Real BENLYSTA patients share their experiences living with lupus and tips for starting BENLYSTA infusion treatment.

Watch these stories about BENLYSTA

 

Want more information about treating lupus?

Find out about BENLYSTA and how it is a different type of treatment for lupus. Discover how BENLYSTA works and how it can be administered for you or your loved one.

Discover the benefits of BENLYSTA