Living With Lupus: Can You Recognize The Signs?
Medically reviewed by Leigh Ann Anderson, PharmD. Last updated on Oct 27, 2022.
What Exactly is Lupus?
If you have lupus, you know it's a challenge to treat. Lupus is an autoimmune disease, a condition that occurs when the body mistakes its own tissue as foreign and attacks itself.
Lupus can result in an attack on many body systems, including the joints, skin, kidneys, heart, lungs, blood vessels and brain.
Lupus, also known scientifically as Systemic Lupus Erythematosus (SLE), often results in symptoms of:
- mouth sores
- rash, fatigue
- joint pain and swelling
- kidney damage.
The cause of lupus is not fully known, and in severe cases, lupus can be fatal. Research data suggests that problems in the immune system promotes inflammation instead of fighting it, leading to symptoms and damage in the organs. It's cause is probably a mix of genetics and environmental factors, too.
Who Gets Lupus?
In the U.S., from 300,000 to 1.5 million people may be affected by lupus according to the FDA.
- It is not an insignificant condition: more than 24,000 new cases are diagnosed each year.
- Women get lupus 10 times more frequently than men, and the average age of onset is 15 to 44 years, in the prime working stage of life. But men, children, and teens can develop lupus, also.
- It is more common in African-American, Hispanic, Asian, and Native American women.
While anyone is can be affected by lupus, African-American women are 3 times more prone than white, non-Hispanic women, and it can be more serious in these women.
In the US, 1 out of every 250 African-American women will develop lupus. In a report from the CDC, it was found mortality (death) among persons with SLE is the highest among black females.
What Causes Lupus?
Researchers have not pinpointed the exact cause of lupus, but research points to these culprits:
- Alterations in the immune response may lead to inflammation and organ damage associated with lupus. Different cell types, such as B cells, T cells or the protein interferon may be involved.
- Genetics may play a role, as those who develop lupus may inherit the risk from one or both parents. Lupus is more common among African Americans, African Caribbeans, Asian Americans and Hispanic Americans than Caucasians in the U.S.
- Most people who get lupus are premenopausal women. Some researchers also think hormones may be involved.
- Lupus may also be triggered by a virus or other type of infection in people more at risk for lupus.
- Lupus can flare when the person is exposed to a certain trigger, like being pregnant, sunlight exposure, or after surgery.
- Lupus can also be triggered by certain types of anti-seizure medications, blood pressure medications and antibiotics, which may be reversible when the medication is stopped.
The Symptoms of Lupus Can Vary
Lupus symptoms can be difficult to control and may flare-up over time.
- A "butterfly rash", the signature redness across the nose and cheeks following sunlight exposure, is a telltale sign of lupus.
- Inflammation and damage to organ systems, especially the kidneys, can be severe. When lupus affects the kidneys, it can lead to lupus nephritis.
- Debilitating fatigue, muscle pain and fever can frequently occur. Joint pain and stiffness, primarily the fingers, wrist, and knees, are early signs of lupus.
- Weight changes: Weight loss may be due to lack of appetite. On the flipside, weight gain may be due to fluid retention and a boosted appetite due to using medicines known as corticosteroids (to help with inflammation and pain).
- Heart, lung, stomach or nervous system problems may develop.
- Mouth sores, dry eyes and hair loss can occur, too.
How to Diagnose Lupus: It's Not So Cut and Dry
The diagnosis of lupus is not always straightforward. Signs and symptoms can vary from person to person, and one test cannot diagnose lupus.
Your specific signs and symptoms, certain blood and urine tests, and a physical exam by your doctor will help to make the diagnosis.
Tests may include:
- Complete blood count
- Erythrocyte sedimentation rate (or "sed rate"), a blood test that detects inflammation.
- Blood tests to determine kidney and liver function
- Antinuclear antibody (ANA) test, a blood test that can tell if your immune system is mistakenly attacking your own body.
- Chest x-ray or echocardiogram
- Kidney biopsy
How to Treat Lupus: Older Standbys
While great advances are being made in lupus, there is no cure yet. Treatments act to limit symptoms, prevent organ damage, and lower the risk of flare-ups.
Common drugs used to treat lupus include:
- NSAIDs like naproxen sodium (Aleve) and ibuprofen (Advil, Motrin IB, others) can help to relieve joint and muscle pain and relieve fever.
- Hydroxychloroquine (Plaquenil) or chloroquine. Almost everyone receives one of these medicines daily to help with fatigue and fever, muscle pain, and skin symptoms, as well as lowering the number of flares.
- Corticosteroids, like prednisone, are used in patients that have organ involvement and inflammation, but their benefits should be weighed against possible side effects like increased risk of infection, bone thinning, weight gain, elevated blood glucose (sugar) or development of diabetes.
- Immunosuppressants like: azathioprine (Imuran, Azasan), mycophenolate (CellCept), leflunomide (Arava), and methotrexate (Trexall).
Older medicines may work well for lupus but tend to suppress the whole immune system which can lead to elevated risk for infections and troublesome side effects.
Systemic Lupus Treatment: Benlysta
In 2011, the FDA approved Benlysta (belimumab), the first lupus treatment since 1955.
- It is approved by the FDA for the treatment of patients aged 5 years and older with active, autoantibody‑positive, systemic lupus erythematosus (SLE) who are receiving standard therapy.
- The pediatric use for SLE was approved in 2019.
- The FDA has also approved Benlysta to treat adults and children 5 to 17 years of age with active lupus nephritis (LN) who are receiving standard therapy.
Benlysta is a monoclonal antibody that targets the B-lymphocyte stimulator (BLyS) protein and lowers abnormal B cells. B cells normally produce antibodies to fight disease, but B cells can mistakenly attack the body, too, as in lupus.
Benlysta is given as an intravenous infusion in patients 5 years of age or older. It can also be given as an injectable subcutaneous (SQ) injection under the skin for adults patients 18 years of age and older. You or a caregiver may be able to inject SQ Benlysta at home after adequate training.
Side Effects: The most common side effects can include nausea, leg pain, diarrhea, runny or stuffy nose, bronchitis, trouble sleeping, depression, migraine, sore throat, injections iste reaction (with SQ injection) and fever. Patients also commonly experienced infusion reactions, so pre-treatment with an antihistamine may be needed.
Lupkynis OK'd for Lupus Nephritis
Kidney disease is a fairly common complication of lupus, affecting up to 50% of adults and 80% of children. Lupus nephritis (LN) is a type of kidney disease caused by lupus that can eventually lead to kidney failure, heart complications, the need for dialysis, kidney transplant, or death.
In Jan 2021 the FDA approved Lupkynis (voclosporin), a calcineurin-inhibitor immunosuppressant used with an immunosuppressive regimen to treat adult patients with active lupus nephritis (LN). The recommended starting dose is 23.7 mg orally every 12 hours on an empty stomach. Lupkynis is from Aurinia Pharmaceuticals. Use in combination with mycophenolate mofetil and corticosteroids.
In 52-week long studies, Lupkynis treatment significantly improved outcomes for patients when added to the standard-of-care (SoC), mycophenolate mofetil (MMF), and low dose steroids. Lupkynis plus SoC was more than two times as effective at achieving a complete renal (kidney) response and led to a decline in urine protein creatinine ratio (UPCR) twice as fast than SoC used alone.
Lupkynis carries a Boxed Warning for malignancies and serious infections. Common side effects (>3%) include reduction in glomerular filtration rate, high blood pressure, diarrhea, headache, anemia, and cough, among others.
Saphnelo (anifrolumab) from AstraZeneca
In July 2021, the FDA approved Saphnelo (anifrolumab), a first-in-class type I interferon (IFN) receptor antagonist to treat adults with moderate to severe systemic lupus erythematosus (SLE), who are receiving standard therapy. Saphnelo is administered via intravenous infusion over a 30-minute period every 4 weeks.
Saphenelo works by binding to IFNAR1 (subunit 1 of the type 1 interferon receptor) and blocks the activity of type 1 interferon (IFN-1), which are commonly found in patients with SLE. IFN-1 is a central driver of lupus disease activity that impacts both parts of your immune system.
Saphnelo can cause serious side effects including serious, possibly fatal infections and severe allergies like anaphylaxis or angioedema. The risk of malignancies (cancer) is increased with imunsuppressants. Do not receive live or live-attenuated vaccines while using Saphnelo.
Common side effects (> 5%) may include include common cold symptoms (nasopharyngisitis), upper respiratory tract infections, bronchitis, infusion-related reactions, herpes zoster (shingles) and cough. Infusion-related reactions (headache, nausea, vomiting, fatigue, dizziness) occurred in 9.4% of patients vs. 7.1% on placebo.
How to Cope With Lupus
Lupus has no cure, but you can learn to control symptoms with treatment options and a healthy lifestyle.
- First, don't push yourself too hard each day at work or at home, and take a break when needed. To reduce stress, exercise, gather with friends, and relax.
- Seek out the Drugs.com Lupus Support Group that can be a sounding board for concerns and questions you may have.
- Avoid sunlight, use sunscreens, and wear protective clothing — such as a hat, long-sleeved shirt and long pants — every time you go outside.
- Keep your scheduled doctor appointments and be sure to stay up with recommended vaccines to help lessen the chances of complications.
- Finally, educate yourself on the latest lupus news to be better prepared for future healthcare decisions.
Finished: Living With Lupus: Can You Recognize The Signs?
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- Saphnelo (anifrolumab-fnia) prescribing information. 7/2021. AstraZeneca. Wilmington, DE. Accessed Nov. 18, 2022 at https://den8dhaj6zs0e.cloudfront.net/50fd68b9-106b-4550-b5d0-12b045f8b184/44b6985c-8268-46b1-ba3e-2bb43bfd4d4c/44b6985c-8268-46b1-ba3e-2bb43bfd4d4c_viewable_rendition__v.pdf
- Aurinia Renal Response in Active Lupus With Voclosporin (AURORA). Clinical Trials.gov (ClinicalTrials.gov Identifier: NCT03021499). Accessed Nov. 18, 2022 at https://clinicaltrials.gov/ct2/show/NCT03021499
- Aurinia: Ready For Voclosporin's Positive Jan. 2021 NDA Announcement, 45% Upside. Oct. 14, 2020. Accessed Nov. 18, 2022 at https://seekingalpha.com/article/4379047-aurinia-ready-for-voclosporins-positive-jan-2021-nda-announcement-45-upside
- Racial Disparities in Mortality Associated with Systemic Lupus Erythematosus — Fulton and DeKalb Counties, Georgia, 2002–2016. CDC. Morbidity and Mortality Weekly Report (MMWR). May 10, 2019 / 68(18);419–422. Accessed Nov. 18, 2022 at https://www.cdc.gov/mmwr/volumes/68/wr/mm6818a4.htm
- Lupus Therapies Continue to Evolve. US Food and Drug Administration (FDA). Accessed Nov. 18, 2022 at https://www.fda.gov/consumers/consumer-updates/lupus-therapies-continue-evolve
- GSK Receives FDA Approval for a New Self-Injectable Formulation of Benlysta (belimumab) for Systemic Lupus Erythematosus. July 21, 2017. Accessed Nov. 18, 2022 at https://www.drugs.com/newdrugs/gsk-receives-fda-approval-new-self-injectable-formulation-benlysta-belimumab-systemic-lupus-4563.html
- Lupus Foundation of America. What is Lupus? Accessed Nov. 18, 2022 at https://www.niams.nih.gov/health-topics/lupus
- Up to Date: Patient information: Systemic lupus erythematosus (SLE) (Beyond the Basics). Up To Date. Accessed Nov. 18, 2022 at https://www.uptodate.com/contents/systemic-lupus-erythematosus-sle-beyond-the-basics
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