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Building a Support Network

Morgan

Actual patient
receiving BENLYSTA

Get tips on how to share your lupus experiences with your support network.

Help Others Understand Lupus

 

By sharing your experiences with close friends and family, you can help others understand the challenges you face with your lupus and build stronger connections.

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Tip 1: Talk to Your Loved Ones

 

Why should I do this? 

The fact that you have lupus can feel overwhelming to your family and friends. They may have trouble understanding and adjusting to your diagnosis. They may feel helpless, confused, or fearful. They may also need to take on added responsibilities.  
 
What should I do?  
Try to have an open and honest conversation. It may also help the people in your support system to learn about lupus (see tip 4), so they can better understand how you’re feeling.

 

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Tip 2: Help Others See Things From Your Perspective

 

Why should I do this? 

Some people have difficulty understanding how you feel when you have lupus. 

 

What should I do? 

Try talking them through a day in your life, using real-life examples to help them understand what it’s like to have lupus. Put your symptoms and how you are feeling into terms that are easier for others to understand. 

 

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Tip 3: Give Them Learning and Support Tools 

 

Why should I do this?  
As the saying goes, knowledge is power. Having information on lupus and treatments may help your loved ones better support you during your treatment experience.  
 

What should I do?  
You can refer the important people in your life to this website to learn more about treating lupus with BENLYSTA.

 

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Tip 4: Consider Taking Someone Along to Your Appointment 

 

Why should I do this? 

Your loved ones may have questions about lupus. Your appointment may give them the chance to ask their questions. It may also help them better understand what you are going through. They can help remind you what your doctor told you during the appointment as well. 

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In a clinical study in Black patients, a reduction in disease activity was seen but was not statistically significant. Consult your healthcare provider to see if BENLYSTA is right for you.

Facing a Lupus Diagnosis

Learn from other people who are living with lupus. Follow their diagnosis stories and see how they met this challenge and moved forward.

Michelle: My personality is definitely one of being a perfectionist. Anyone that knows me – my husband, my children – they know I like to dot the “i’s” and cross the “t’s”.

Morgan: As a child, you could find me in the water with my yellow lab, Chelsea. I guess you’d say I was your typical tomboy.

Susan: After seeing The Nutcracker for the first time, dance was one of my passions. Like, once the music started playing, everything else melted away.

Michelle: I grew up watching my mother fight lupus and as I became a young adult, I became her caregiver and that sort of instilled in me a fear, and a denial that there was no way I ever was going to have lupus. I was going to do everything possible – not that there’s anything you can do to prevent lupus. Even when I started having symptoms, I hid them from everyone …even my family.

Morgan: I didn’t tell anyone for years. My mom thought I was imagining it. In many ways getting the diagnosis was a huge relief. I did some research and found out that lupus is a chronic disease, with no cure. I decided, at that point, that I wasn’t going to be labeled by my lupus. I was going to fight it.

Susan: I guess I started having symptoms before my son was born, but I didn’t get the official diagnosis until my early 30s when he was about 2 years old, it was a very difficult time for me.

Michelle: I think it’s difficult for people to understand what people with lupus really experience. They look at them on the surface and they say: “They’re okay. They look fine.” I was able to finally take a deep breath and stop with the façade that everything was okay. So, when I finally – with the help of my rheumatologist – had that diagnosis, and said: “we need to go from here. We need to involve your family, your friends.

Dr Lambert: Lupus affects everyone differently. The symptoms are wide-ranging and can change over time. So, the clinical course of someone with lupus often is unpredictable. In some people, the first symptoms may resemble an infection. In others, lupus begins as a series of vague, seemingly unrelated symptoms that may progress over several years. Because of the great variability, a thorough medical examination by a healthcare professional familiar with lupus, typically a rheumatologist, is often required to make an accurate diagnosis.

Working With Your Healthcare Team

Learn about the importance of working with your healthcare team to better understand and treat lupus.

Renee: The very first thing that you have to assess in determining what a good – whether or not you’re going to have a good relationship with your physician, or your potential physician is whether or not you can communicate with this person. Communication is key. Because if your doctor is not hearing you, then you can – you’re not feeling like your needs are being addressed, and so that would – I would say number one is communication. The important thing when you kind of come for your infusion process, the doctor’s appointment, is to, first of all, assess how you’re feeling that day and during the time that it’s been since you were last there. I would make a list of all the questions that I had so that when the doctor would come in and see me, I would make sure that I was covering everything …and in between appointments, again, because it’s important to be able to call your doctor and speak to them, I will call the doctor – I try not to abuse the process, but I will call the doctor to let him know how I’m feeling or if something seems out of the ordinary. Because actually they really do want to know, and so you can either bring that information in or you can call ahead of time. But if you have a list and if you are conscious about how you’re feeling and make sure that you want to go over those things with your doctor, that’s the most important thing.

Lacy: It’s just absolutely imperative that you be as up front and honest with your doctor about everything that’s going on with you when you have lupus and you’re going in for treatments. The only way that your doctor is going to be able to have a concise picture of your make up and your health and your current situation is if you are not omitting anything. So, you’ve got to be 100 percent transparent when you deal with your doctor and the staff and let them know where you’re at. The thing that makes my relationship so strong with my rheumatologist is the fact that she listens to me. When I first got diagnosed with lupus, I had so many questions. In fact, I would make lists. I would go in with lists, so I didn’t miss anything. She took so much time to make me understand anything that I might be unclear on, and over the course of time, that’s really gone a long ways towards securing a strong relationship between the two of us. The one person on my healthcare team that means the most to me is my nurse. The nurse actually is the one who does the infusion for me when I go in each month. She is just fantastic. We have built a really strong and wonderful relationship and bond over the time that I’ve been going there. She takes extra time to answer any questions that I have, and she has just gone so out of her way to make me feel at ease with every aspect of getting my infusion.

Sheba: When I first met my doctor, I think he made me feel a certain confidence in his ability. He right away diagnosed me, first of all, you know, the official diagnosis, and he had a firm grasp on what I was experiencing and why, and what I should do and my prognosis. So, I think that I felt confident with him. Especially at first, I had a lot of questions about lupus and about BENLYSTA. I would actually come prepared with a paper with my questions listed on them and I had read literature about lupus and I had read a lupus book, and so I would write down the questions and make sure I didn’t miss anything. So, I would come prepared, and I think that really got me on a good footing and I really got a good overall understanding of lupus. Now, I basically rely on him for everything that I need. I mean, I do communicate with everyone on the team. With my doctor in particular, I bring up any issues I’ve had since my last visit, or even in between visits, what I do is I email him any issues I may have had and I call him on the phone any time and speak to him about anything I might be experiencing – any symptoms, any concerns, and he addresses them.

Renee: One of the consequences of not being up front and open with your doctor is later having a feeling of frustration and having a feeling of regret that, “Geez, I wish I had gone ahead and said blah, blah, blah, and I wish I had been more open about that,” and all of that frustration, all of those feelings of anxiety are so unnecessary if you just make your list or if you make it a point to talk about what is bothering you the most. It’s so important to, again, communicate, to be open, to be honest, and to just say whatever it is that you’re feeling because later on you don’t want to be thinking, “Maybe I should have talked to him about it” because then it’s causing more frustration and more anxiety.

What Kind of Medicine is BENLYSTA?

 

BENLYSTA (belimumab) is a biologic therapy, not a steroid. It is taken in addition to your other lupus medications and is available in three options:

  • an autoinjector, for adults, you self-inject
  • a prefilled syringe, for adults, you self-inject
  • an intravenous (IV) infusion, for adults and children ages 5 and above, a healthcare provider administers

 

Learn more about BENLYSTA

Frequently Asked Questions

  • Where can I find more information on living with lupus and treatment with BENLYSTA?

    BENLYSTA Cares offers resources created with you in mind—including educational materials and on-call nurse* guidance to answer questions about BENLYSTA.

     

    BENLYSTA Gateway provides coverage information and information on the BENLYSTA Co-pay Program.

     

    * Nurses from BENLYSTA Cares do not give medical advice. They are only able to answer questions about BENLYSTA. These may include help with self-injections, guidance for getting BENLYSTA, answers about the co-pay program, and other general information. They will direct you to your healthcare provider for answers to other types of questions.

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  • How can I build a better relationship with my doctor?

    Download our Doctor Discussion Guide for a detailed and helpful checklist of things you can do to help make your next appointment a success.

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Learn about treatment from BENLYSTA patients

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

Watch and discover now

 

Want to learn about lupus and BENLYSTA treatment?

Find support groups in the lupus community. Plus we offer a variety of support materials about lupus that may help you find the information you need.    

Get more tools and resources for BENLYSTA