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Nicole

Actual patient
receiving BENLYSTA

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Lupus Information & Patient Stories | BENLYSTA (belimumab)

Want to learn more about lupus or BENLYSTA? Patients taking BENLYSTA will share their stories about lupus diagnosis, living with lupus, and starting and continuing treatment with BENLYSTA.

Introducing the Experience Series

See how patients on BENLYSTA living with lupus, their support networks, and rheumatologists fight together against the disease.

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.

Susan: 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.

Our immune system plays an important role in protecting us from infection. Lupus is a disease that results from abnormal activity in the immune system. To understand lupus, it’s helpful to first have an understanding of certain parts of the immune system known as white blood cells, B cells, and antibodies. White blood cells are cells in the blood stream that recognize and help destroy germs such as viruses and bacteria that cause infections. B cells are a specific type of white blood cells that produce antibodies, and antibodies are a type of protein that attach to the surface of germs. This attachment marks the germ as a foreign invader, and this is a key step in the destruction and removal of germs from the body. In people with lupus, certain B cells become autoreactive. What that means is these B cells release a type of antibody that attaches to healthy tissues instead of attaching to germs. When this happens, the immune system attacks the healthy tissues. This immune system attack on healthy tissues can lead to disease activity in lupus.

Lacy: When I first started talking to my doctor about the possibility of going on BENLYSTA, I absolutely had so many different questions.

Some of the questions that I had for her were about the infusion process itself. I’m not a big fan of needles, but I definitely had questions about how the whole infusion process took place. Other questions that I had were, of course, any potential side effects that I might encounter. Also, it was important for me to know how long it would take for the infusion itself. My doctor discussed it with me in great detail. Of course, I had many, many, many questions and after I reached a certain level of comfort, I said, “I’m going to go for this.”

Sheba: Having BENLYSTA out there as an additional treatment option to fight my lupus means a lot to me. When I decided to go on BENLYSTA, my doctor and I considered the side effects and the benefits of being on BENLYSTA, and I decided to go for it – and since then I’ve stayed on the drug. I think it being the first lupus drug on the market in 50 years and the first drug to be specifically targeted just for lupus means a lot.

Max: Why I went on BENLYSTA and the choice that I had was it was recommended from the team, my doctor. Having BENLYSTA being the first drug in over 50 years. I just – I want people to know.

Karen: Having BENLYSTA to fight my lupus and having it as a treatment option for my lupus really helped me and just talk to your physician to see if you would be a candidate for BENLYSTA.

Morgan: I was excited to try BENLYSTA, but I wasn’t sure I would be covered by my parents’ insurance plan, and if I could manage the costs. My doctor told me about BENLYSTA Gateway, helped me complete the enrollment form, and suggested that I give them a call. The person who answered the phone told me about the BENLYSTA Co-pay Assistance Program.

Susan: As soon as my physician told me to consider BENLYSTA, he sent me over to the infusion center to talk with some of the nurses there. My nurse also mentioned that I could call BENLYSTA Gateway any time I needed. When I did I definitely found the people there to be very helpful and compassionate. They helped me with everything I needed to know.

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.

Getting Started With BENLYSTA

Learn more about starting treatment with BENLYSTA from actual patients.

Lacy: When I first started talking to my doctor about the possibility of going on BENLYSTA, I absolutely had so many different questions. Some of the questions that I had for her were about the infusion process itself. I’m not a big fan of needles, but I definitely had questions about how the whole infusion process took place. Other questions that I had were, of course, any potential side effects that I might encounter. Also, it was important for me to know how long it would take for the infusion itself. My doctor discussed it with me in great detail. Of course, I had many, many, many questions and after I reached a certain level of comfort, I said I’m going to go for this.

Sheba: Having BENLYSTA out there as an additional treatment option to fight my lupus means a lot to me. When I decided to go on BENLYSTA, my doctor and I considered the side effects and the benefits of being on BENLYSTA, and I decided to go for it – and since then, I’ve stayed on the drug. I think it being the first lupus drug on the market in 50 years and the first drug to be specifically targeted just for lupus means a lot.

Max: Why I went on BENLYSTA and the choice that I had was it was recommended from the team, my doctor. Having BENLYSTA being the first drug in over 50 years. I just – I want people to know.

Karen: Having BENLYSTA to fight my lupus and having it as a treatment option for my lupus really helped me, and just talk to your physician to see if you would be a candidate for BENLYSTA.

Morgan: I initially found out about BENLYSTA through my rheumatologist. My doctor and I had a very good relationship. When BENLYSTA got the FDA approval, she said, “let’s do this.” Of course, I was nervous, but she answered my concerns, and after weighing the pros and cons I finally decided to take her advice.

Susan: It's interesting how I found out about BENLYSTA. My mother had actually sent me a newspaper article that was talking about BENLYSTA. The fact that it was the first FDA-approved medication for lupus in over 50 years got me so excited. I couldn’t wait to talk to my doctor about it.

Morgan: I’ve learned that we all experience lupus differently, and what works for one person may not work for another. My rheumatologist understands that, and has worked with me. I feel like she empowers me as a patient. I do have a say. It is my disease – it is my life.

Michelle: My rheumatologist first spoke to me about BENLYSTA when we were really at a low point. I didn’t want to try new things. I just kept thinking it would get better, and it didn’t. And she sat down with me and she said that adding BENLYSTA to other lupus medicines could help lower my disease activity, and she gave me some information about it. And she told me to go home and read and research, and to come back and see her, and we would talk about it.

Susan: My rheumatologist was very influential in helping me decide that BENLYSTA was a good choice for me. He looked at my lab work, and we talked about the medications I was on. He also sent me over to the infusion center, so that I could get acquainted with the site and the nurses. I still feel more like his partner than his patient.

Michelle: When my doctor first told me about BENLYSTA infusions, I was a little bit nervous. You know, it seemed like it was a big commitment – it was a big step…having to go and start taking infusions. Where would I have this done? How long would it take? What kind of side effects? I mean, all those thoughts were whirling through my head. You know, I had a life to continue to live. How would I fit infusion into my life?

Morgan: When I first learned that BENLYSTA was delivered via infusion, it was something that certainly made me a little bit nervous. I think that’s a huge decision to make – to be able to, you know, understand and comprehend that that stuff is going to go directly into you.

Michelle: My rheumatologist told me that every patient is different and responds differently.

Morgan: Before I started therapy with BENLYSTA, I still had a lot of questions. What were some of the side effects? Could I afford it? My doctor recommended I call BENLYSTA Gateway. They were able to answer my questions about BENLYSTA, and after talking to my family, I was finally in a place where I felt comfortable giving it a try.

Morgan: I was excited to try BENLYSTA, but I wasn’t sure I would be covered by my parents’ insurance plan, and if I could manage the costs. My doctor told me about BENLYSTA Gateway, helped me complete the enrollment form, and suggested that I give them a call. The person who answered the phone told me about the BENLYSTA Co-pay Assistance Program.

Susan: As soon as my physician told me to consider BENLYSTA, he sent me over to the infusion center to talk with some of the nurses there. My nurse also mentioned that I could call BENLYSTA Gateway any time I needed. When I did, I definitely found the people there to be very helpful and compassionate. They helped me with everything I needed to know.

Susan: I honestly don’t think I could be where I am today without my parents and friends. When you have a chronic illness like lupus – one that’s so unpredictable – having a good support system is really important. I mean, there may be days when you just don’t feel well enough to do much of anything. So having that one or more people that you feel comfortable with – people that you can really depend on – is very helpful.

Michelle: I think it’s really important to have an open line of communication with your rheumatologist. It really wasn’t until I was able to open up to my doctor and talk to her about everything that was going on with me with my symptoms – what was working and what wasn’t working. And only at that point were we able to find a treatment strategy that was able to help me.

Morgan: My advice for other lupus patients is to be your own advocate. You need to make your own personal decisions. Remember, it’s a disease, not who you are. So, live your life. Find something you’re passionate about – like a hobby – something worth getting out of bed for every day. For me, it’s my wonderful dogs.

Susan: Get educated – learn everything you can about lupus ...and about BENLYSTA. Talk to people, read articles, ask questions, go online. I find BENLYSTA.com a really great resource.

Michelle: Stay positive. Continue to be your own best advocate, and find what works for you, as an individual person with lupus. Don’t let lupus define you. You are still you. And never be afraid of asking for help when you need it.

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.

Lacy: 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.

Considering Infusion with BENLYSTA

Learn from patients about starting intravenous (IV) infusions of BENLYSTA.

Every person's treatment experience is unique. But with the video series, we hope you will gain a greater understanding about BENLYSTA and how it has impacted other patients' lives.

Lacy: When I first started talking to my doctor about the possibility of going on BENLYSTA, I absolutely had so many different questions. Some of the questions that I had for her were about the infusion process itself. I’m not a big fan of needles, but I definitely had questions about how the whole infusion process took place. Other questions that I had were, of course, any potential side effects that I might encounter. Also, it was important for me to know how long it would take for the infusion itself. My doctor discussed it with me in great detail. Of course, I had many, many, many questions and after I reached a certain level of comfort, I said I’m going to go for this.

Sheba: Having BENLYSTA out there as an additional treatment option to fight my lupus means a lot to me. When I decided to go on BENLYSTA, my doctor and I considered the side effects and the benefits of being on BENLYSTA, and I decided to go for it – and since then, I’ve stayed on the drug. I think it being the first lupus drug on the market in 50 years and the first drug to be specifically targeted just for lupus means a lot.

Max: Why I went on BENLYSTA and the choice that I had was it was recommended from the team, my doctor. Having BENLYSTA being the first drug in over 50 years. I just – I want people to know.

Karen: Having BENLYSTA to fight my lupus and having it as a treatment option for my lupus really helped me, and just talk to your physician to see if you would be a candidate for BENLYSTA. 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.

Susan: Of course, I was a little apprehensive at my first infusion, but I had done my homework, so my biggest concern was if they’d be able to get my vein right away. Thankfully, they did.

Michelle: Before they start the infusion, they’ll take your vitals and weight so they can calculate the right dosage just for you. Once they have the medicine ready, they will prep your arm and choose a vein. I know for me, the very first infusion, it was definitely a little nerve-wracking… The nurses walked me through everything, reassured me that they were there, every step of the way. And I remember just looking up at that infusion bag and saying, “Well this is it - I really hope this helps.”

Susan: I think sitting in the chair, when I started to receive my infusion for the first time, I was just – I was actually hopeful. I just had this incredible sense of hope that this might be the drug that would help me.

Morgan: During my first BENLYSTA infusion, I was certainly nervous. I remember it being cold and quiet in the infusion clinic. My mother was there with me – she’s always there helping me and coming along for the ride. Those poor nurses – I never stopped talking.

Michelle: The best thing is to think about this, as you know, an hour, an hour and a half of time, just for yourself. If you like to read, bring a book. If you’re someone who likes to knit or do things like that, bring something that is, you know, something that you can do on your time…this is about you.

Morgan: During my BENLYSTA infusions – it usually takes around an hour – and this time is usually spent for me. It’s my time. It’s my time to sit and reflect on things that are happening in my life. During my BENLYSTA infusions, I typically have snacks – of course, cuz you know, you sit there for long enough – and books to read. Obviously, I have – I like to chat. There’s a lot of other patients around usually in the clinic, so I’m able to converse with them. And that helps to pass that time.

BENLYSTA Cares Logo

No two people have the same experience with lupus. That’s why BENLYSTA Cares is there for you every step of the way, from addressing coverage questions to over-the-phone support and education from trained nurses.*

*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.

DISCOVER BENLYSTA CARES

Frequently Asked Questions

  • Is BENLYSTA a steroid?

    No, BENLYSTA is a biologic, not a steroid. It is a protein that can help reduce abnormal immune system activity that contributes to lupus disease activity.
     

    Learn more about how BENLYSTA works

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  • Will my insurance or Medicare cover the cost of BENLYSTA?

    Each insurance policy is different and costs depend on your individual plan.

    To understand your cost for BENLYSTA, contact your insurance company or call BENLYSTA Cares at 1-877-4-BENLYSTA (1-877-423-6597). BENLYSTA Cares will connect you to BENLYSTA Gateway, which can research your estimated cost for BENLYSTA under your insurance policy.

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  • Who might be a candidate for treatment with BENLYSTA?

    BENLYSTA is not for everyone. Ask your doctor if BENLYSTA is right for you. Here are a few things you and your doctor may consider before prescribing BENLYSTA:

    • You have already been diagnosed with systemic lupus erythematosus (SLE).
    • You are currently taking medicines to help manage your lupus.
    • Your lupus has continued to be active.

     

    Remember, only you and your doctor can decide whether BENLYSTA is right for you.

     

    Other information to consider

    • It is not known if BENLYSTA is safe and effective in people with severe active lupus nephritis or severe active central nervous system lupus.
     

    BENLYSTA and pregnancy

    • Before you receive BENLYSTA, tell your healthcare provider if you are pregnant or plan to become pregnant. It is not known if BENLYSTA will harm your unborn baby.

    • You should talk to your healthcare provider about whether to prevent pregnancy while on BENLYSTA. If you choose to prevent pregnancy, you should use an effective method of birth control while receiving BENLYSTA and for at least 4 months after the final dose of BENLYSTA.

    Tell your healthcare provider right away if you become pregnant during your treatment with BENLYSTA or if you think you may be pregnant.

    • If you become pregnant while receiving BENLYSTA, talk to your healthcare provider about enrolling in the BENLYSTA Pregnancy Registry. You can enroll in this registry by calling 1-877-681-6296. The purpose of the registry is to monitor the health of you and your baby.

    • Tell your healthcare provider if you are breastfeeding or plan to breastfeed. It is not known if BENLYSTA passes into your breast milk. You and your healthcare provider should decide if you will receive BENLYSTA and breastfeed.

     

    This is not the full list of the things your healthcare professional will need to consider before prescribing BENLYSTA. For more information, refer to the Medication Guide for BENLYSTA and talk to your doctor.

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Want to learn more about resources for BENLYSTA?

Whether you are just getting started with BENLYSTA, or have been taking BENLYSTA for a while, BENLYSTA Cares offers support and ongoing resources throughout the course of your treatment. Sign up now for BENLYSTA Cares

Looking to learn more about lupus and BENLYSTA?

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