8 Things I Wish People Knew About Lupus and Autoimmune Conditions
Key takeaways:
Samantha Boothe was a college basketball prospect who started having regular, inexplicable pain. She was eventually diagnosed with lupus.
Lupus is an autoimmune disease that attacks the body’s tissues and organs.
The symptoms of lupus are mostly invisible, so people have no idea how much a person is suffering.
At 14, Samantha Boothe was a college basketball hopeful. She played competitively on travel teams and her high school team, and dreamed of one day earning a college scholarship.
But she didn’t understand why some days she felt weak and in pain. Overtraining? Maybe. She brushed it off, as did her parents.
Until the day in 2008 when her hip went out and her fingers turned blue, triggering a trip to the emergency room and a follow-up doctor’s visit.
“As soon as I got to the doctor, she said, ‘You’re very, very swollen,’” Samantha remembers. “And she knew something was wrong right away. She referred me to a rheumatologist, and that was it. From there, I was pretty much diagnosed within 3 months.”
Looking to save on BENLYSTA (belimumab)?
BENLYSTA is for people 5+ with active SLE (lupus) or active lupus nephritis on other lupus medicines. Not for people with severe active central nervous system lupus.
Do not use BENLYSTA if you are allergic to belimumab or any ingredients in BENLYSTA.
The most important information about BENLYSTA
Immunosuppressive agents, including BENLYSTA, can cause serious side effects. Some of these may cause death.
• Infections:
fever, chills, pain or burning with urination, urinating often, coughing up mucus, or warm, red, or painful skin or sores on your body. Infections could be serious, leading to hospitalization or death.
• Allergic (hypersensitivity) reactions:
itching, swelling of the face, lips, mouth, tongue, or throat, trouble breathing, anxiousness, low blood pressure, dizziness or fainting, headache, nausea, or skin rash. Serious allergic reactions can happen the day of, or in days after, receiving BENLYSTA and may cause death.
• Mental health problems and suicide:
thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety or depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others.
Before receiving BENLYSTA, discuss with your healthcare provider if you:
• think you have an infection or have infections that keep coming back. Do not use BENLYSTA if you have an infection unless your healthcare provider tells you to.
• have or have had mental health problems such as depression or thoughts of suicide.
• have recently received or may need a vaccination. If you are receiving BENLYSTA, you should not receive live vaccines.
• are taking any medicines, including prescription, over-the-counter, vitamins, and herbal supplements.
• are allergic to other medicines.
• are receiving other biologic medicines.
• have or have had any type of cancer.
• have any other medical conditions.
• are pregnant or plan to become pregnant. It is unknown if BENLYSTA will harm your unborn baby. 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 for at least 4 months after the final dose of BENLYSTA.
• 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 1-877-311-8972 or go to https://mothertobaby.org/ongoing-study/benlysta-belimumab/
• are breastfeeding or plan to breastfeed. It is unknown if BENLYSTA passes into your breast milk.
Possible side effects of BENLYSTA
• Progressive multifocal leukoencephalopathy (PML). PML is a serious and life-threatening brain infection. PML can result in death or severe disability. Tell your healthcare provider right away if you notice any new or worsening medical problems: memory loss, trouble thinking, dizziness or loss of balance, difficulty talking or walking, or loss of vision.
• Cancer. Medicines that affect the immune system, including BENLYSTA, may increase your risk of certain cancers.
The most common side effects of BENLYSTA are nausea, diarrhea, fever, stuffy or runny nose and sore throat, persistent cough, trouble sleeping, leg or arm pain, depression, headache, and pain, redness, itching, or swelling at the site of injection (when given subcutaneously). These are not all the possible side effects of BENLYSTA. Call your doctor for medical advice about side effects.
Please see Prescribing Information and Medication Guide for BENLYSTA.
What is BENLYSTA?
BENLYSTA is a prescription medicine used to treat people 5 years of age and older with active systemic lupus erythematosus (SLE or lupus) or active lupus nephritis (LN) (lupus-related kidney inflammation) who are receiving other lupus medicines. It is not known if BENLYSTA is safe/effective in people with severe active central nervous system lupus.
It is not known if BENLYSTA, given under the skin, is safe/effective in:
• children with SLE under 5 years of age or weighing less than 33 lbs
• children with LN under 18 years of age
It is not known if BENLYSTA, given in a vein (intravenously), is safe and effective in children less than 5 years of age.
BENLYSTA IV is available as 120 mg in a 5-mL single-dose vial and 400 mg in a 20-mL single-dose vial. BENLYSTA SC is available as a 200 mg/mL single-dose autoinjector and prefilled syringe.
Trademarks owned by or licensed to the GSK group of companies.
©2024 GSK or licensor.
PMUS-BELWCNT240036 October 2024
Produced in USA.
The blue fingers were Raynaud’s phenomenon, in which blood vessels spasm from cold temperatures and block blood flow. The underlying reason? Lupus, a disease where the body’s immune system attacks its own tissues and organs.
“I went from playing basketball every day, training, and just being a normal teenager, to suddenly having trouble getting out of bed,” she says. “I couldn’t open the milk carton anymore.”
Now 29, the Las Vegas nonprofit worker has adjusted to her condition — and others that it spawned — and learned ways to manage. But it hasn’t been easy. She’s committed her life to autoimmune education and advocacy, including a website and social media accounts tied to the name HealWithSamantha.
“I remember looking online trying to find people young like me with lupus who were still able to continue their dreams,” she says. “That’s one of the reasons why I share my story online, because I couldn’t find that person. So, I wanted to essentially be that person for someone else to show them, ‘Hey, you can still do these things in your life.’”
Here are several things Samantha would like people to know about lupus.
1. Lupus can affect any organ or tissue in the body
Lupus mainly affects the skin, joints, blood vessels, kidneys, heart, lungs, and brain.
“Just about everyone with lupus has issues with their joints, and fatigue, and then it kind of branches out from there,” Samantha says. “Everyone has their own unique set of symptoms.”
There are different types of lupus, too. Samantha has systemic lupus erythematosus, which can affect any part of the body. There’s also discoid lupus, which mainly affects the skin.
2. Lupus is associated with other conditions
In addition to lupus, Samantha has autoimmune hemolytic anemia. Her red blood cells are under attack by her own body, causing constant fatigue. She also has Sjogren’s, another autoimmune disease. And one of the medications she takes, mycophenolate (CellCept), led to basal skin cancer.
“Once you have one autoimmune disease, there’s an umbrella of different mixed connective tissue diseases that typically can develop,” Samantha says. “And it’s actually pretty common for people to develop more than just one.”
3. It can take years to diagnose lupus
Lupus symptoms, such as joint pain and fatigue, mimic so many other illnesses that the condition is usually diagnosed by process of elimination.
“On average, it takes nearly 6 years to diagnose lupus,” Samantha says. “My experience was different because it took a year for me to realize something was wrong and 3 months to receive a diagnosis.”
One of the main markers used to diagnose lupus is called an antinuclear antibody (ANA). A person might not be diagnosed until they have a positive ANA, which can take years.
Once diagnosed, Samantha says, there is no one-size-fits-all treatment option. Only a few medications have been FDA-approved for treating lupus. Samantha takesImuran (azathioprine), an immunosuppressant medication; hydroxychloroquine (Plaquenil), an anti-malaria medication; and the steroid prednisone.
4. There is a grieving process after a diagnosis
Many of Samantha’s hopes and dreams changed following her lupus diagnosis. She realized she would not play college basketball. Her body just wouldn’t let her.
“You have to kind of grieve the old you or the old dreams you had and essentially change them to your new normal. ‘This is what I can do,’” she says.
While in college, she considered a job as a physical therapist.
“But once I started shadowing, I saw that it was going to be too much on my body,” she says. “I saw how tiring it was, and that the hours might not work. And I decided to change my career path. You have to make a lot of decisions based on your health.”
5. Managing lupus is a full-time job
“Managing a chronic illness can be incredibly draining,” Samantha says. “I have multiple doctor’s appointments, tests, and blood work to complete each month. No one prepares you for how exhausting it is to deal with insurance, appointment scheduling, and medication management — all while in pain.”
Samantha’s mother taught her at a young age how to deal with her doctors and her insurance company on her own. She schedules doctor’s appointments and blood draws on her lunch breaks or around her work schedule.
“People who are healthy, they only call the doctor when they get sick,” she says. “But for me, I’m having to constantly manage.”
She pays about $600 a month on top of her health insurance premiums.
“Depending on what medications and what treatments you’re doing, it could be a lot more,” she says.
6. Even though you can’t see lupus, it doesn’t mean she isn’t in pain
“For the most part, you can’t see the damage lupus is causing to my body,” Samantha says. “Most of the symptoms of lupus are invisible.”
Samantha remembers going to school and “feeling judgment” from classmates and teachers. In high school, a physical education teacher pushed her to participate when she didn’t feel well.
“I can barely get out of bed in the morning, and she’s just seeing that I look healthy,” Samantha says. “I have joint pain and fatigue and all these things going on.
“When you’re young, you’re so worried about what people think of you. I could feel that even more so because when I was out there, people couldn’t see how much pain I was in and how hard it was for me, or how much I was pushing. I was trying my best, but it was really hard to feel that weak and not have people understand.”
7. She doesn’t mean to be antisocial
“Sometimes I say no to plans, even on the days I feel good,” Samantha says. “Lupus flares can happen any time. And when I put too much energy into an activity, my body pays for it the next day. Having to make the decision between your health or friendships can be really draining. Sometimes, when you start to say no to your friends or family, they stop inviting you to stuff.”
8. Lupus guides all her daily decisions
Every day, Samantha makes decisions with lupus in mind. Will she eat something that will make her sick? Did she get too much sun? Will she get an infection if she goes to a certain event? Did she work too long?
“With lupus and other autoimmune issues, generally you can live a long life,” she says. “But I wouldn't say it's an easy life. You’re dealing with the pain and managing your illness.”
Samantha finds solace in helping others. In 2009, only a year into her diagnosis, she posted a video on social media featuring the song “Superwoman,” by Alicia Keys. She used it to encourage herself and others.
“It gained a little traction, and all of a sudden I had 100 subscribers,” she says. “Then I started sharing basically every day — just, ‘Hey, this is my life.’”
She now has more than 20,000 followers on YouTube alone. Unlike when she was 14 and unsuccessfully searching Google for role models with lupus, Samantha is making sure the next searcher like her has plenty of reasons to feel optimistic.
Why trust our experts?
