What Is It Like to Have Lupus? ‘You Just Have to Deal With It Day By Day’
Key takeaways:
Lupus is a chronic illness that causes the immune system to attack healthy tissues.
It can affect various parts of the body, including the skin, joints, kidneys, heart, lungs, and brain. It often presents with symptoms like fatigue, joint pain, rash, and fever.
Lupus is incurable and the severity can vary widely. But it can be managed with medications and lifestyle changes.
Loretta Moutra was diagnosed with lupus in 2016. But the diagnosis did not come easily.
Loretta, a special education teacher in a suburb of Houston, went to doctor after doctor before she got answers.
“I was prescribed medication after medication, just trying to figure it out, because I was getting worse,” she explains in a TikTok video for GoodRx. “My hair was falling out. My skin was just inflamed.”
Loretta, the mother of two young girls, learned the hard way that lupus can be difficult to diagnose as the symptoms can mimic other illnesses. A number of doctors even insisted she did not have lupus. She recalls one distinguished physician telling her she probably had AIDS, until a test proved him wrong.
She finally got a diagnosis from an 80-year-old Venezuelan dermatologist she went to see for her hair loss. He recognized her symptoms and verified the condition with tests.
“It took 6 years,” she says of finally getting diagnosed with lupus.
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.
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©2024 GSK or licensor.
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Produced in USA.
Having lupus can be painful and expensive
Loretta has discoid lupus erythematosus (DLE), an autoimmune condition that affects the skin. It can cause lesions, alopecia, and scarring. And the treatments can be expensive.
Loretta’s doctors have prescribed her a number of medications, with varying degrees of success.
One of her symptoms is being highly sensitive to sunlight. “If I am in the sun, even for 5 minutes, I’ll be hurting for days,” she says.
She had a recent flare because she forgot to close her car’s moonroof when she was driving one day. “My whole body swells up,” she remembers. “I had extreme pain all over. Just touching my skin feels like it’s burning.”
Now, she manages lupus by taking hydroxychloroquine (Plaquenil), a commonly prescribed medication for lupus that helps calm the immune system.
Other treatments have not been as easy for Loretta to handle. Sunlight can also cause lesions on her scalp, and she has tried anti-inflammatory injections for severe flares. But it’s a process she dreads because it involves getting injected with shots on her head.
“It’s so painful,” she says. “It’s a tray full of shots, like 20 needles on a tray, and they just inject all over your scalp. I had that three times. I can’t go through that again.”
Several years ago, a doctor prescribed her Vicodin, an opioid medication used for pain. But, over time, she felt uneasy about taking it. “I told myself, 'You know what? I’m not taking this anymore. I feel myself needing it.’ I don't want to need anything.”
Loretta says she doesn’t want to discourage others from taking medications. She just wants to be choosy about which ones she takes.
“At the end of the day, you have to know your body,” she says.
It can be overwhelming to care for yourself — and everyone else
Loretta has also felt the strain of being a caregiver for herself, her children, and her mother.
She had to quit her job for a while to care for her ailing mother, who passed away in April 2023. Loretta’s mom was so involved in the lives of her grandchildren that their schools named her volunteer of the year. Loretta was sitting next to her mother in the hospital when she died.
“My mom was literally the heart of our family,” Loretta says.
Loretta’s grief and shock over her mother’s death took a toll on her health, she says. She started having panic attacks. So her doctor prescribed her alprazolam (Xanax), which can help treat them.
“I thought I was dying. It really feels like you’re going to just pass out,” Loretta says, describing her panic attacks.
Loretta eventually returned to work. And she now teaches special education to children from prekindergarten to fifth grade. She’s also an ambassador for the Lupus Foundation of America.
Simple lifestyle changes can make a difference
Loretta says she’s considering participating in clinical trials for new lupus medications, depending on the risks. But she doesn’t want to take off work, and she doesn’t want more stress in her life.
“A very integral part of my lupus treatment is stress management,” she says. “It is a huge, important factor because it will flare you up. And you can flare up for weeks.”
Loretta says that keeping her mental health and her diet in check helps her manage her symptoms. “With lupus, your body is sensitive to everything — glutens, lactose, everything. So you have to kind of figure it out,” she says.
Loretta struggled with her weight before and after her lupus was finally diagnosed. She knew that excess weight made her symptoms worse. But it took some time before she hit upon a system that worked for her.
“I was 290 pounds, and I was just in pain every single day,” she says.
After trying a vegan diet, “I gained 20 pounds. I was miserable,” she says. “When I stopped eating wheat and stopped eating sugar, I lost 110 lbs in 10 months. And I didn’t work out one day. That’s all it took — no sugar, no wheat.”
Now, Loretta uses monk fruit sweetener in place of sugar. She says her kids are so used to her diet routine that ordinary sweets give them headaches. She also strives to keep her food choices simple. As part of that, she avoids highly processed items and ingredients she can’t pronounce.
She credits her diet with cutting the number of painful symptoms she experiences.
It’s worth it to take the time to be grateful
When Loretta left her job to care for her mother, she gave up her job-based insurance. So she turned to Affordable Care Act marketplace insurance, which she calls “amazing.”
However, It took a while to get the coverage in place, and she had to pay out of pocket for care in the meantime. “That was kind of difficult at first,” she says.
But it eventually worked out, and Loretta says she is grateful.
“When you’re taking care of your family, you need to take a backseat,” she says. “You just have to deal with it day by day, moment to moment, and not think about the full picture — just think about the moment, get through that moment.”
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